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Family-centered music therapy-Empowering premature infants and their primary caregivers through music: Results of a pilot study.
Menke, BM, Hass, J, Diener, C, Pöschl, J
PloS one. 2021;(5):e0250071
Abstract
BACKGROUND In Neonatal Intensive Care Units (NICUs) premature infants are exposed to various acoustic, environmental and emotional stressors which have a negative impact on their development and the mental health of their parents. Family-centred music therapy bears the potential to positively influence these stressors. The few existing studies indicate that interactive live-improvised music therapy interventions both reduce parental stress factors and support preterm infants' development. METHODS The present randomized controlled longitudinal study (RCT) with very low and extremely low birth weight infants (born <30+0 weeks of gestation) and their parents analyzed the influence of music therapy on both the physiological development of premature infants and parental stress factors. In addition, possible interrelations between infant development and parental stress were explored. 65 parent-infant-pairs were enrolled in the study. The treatment group received music therapy twice a week from the 21st day of life till discharge from hospital. The control group received treatment as usual. RESULTS Compared to the control group, infants in the treatment group showed a 11.1 days shortening of caffeine therapy, 12.1 days shortening of nasogastric/ orogastric tube feed and 15.5 days shortening of hospitalization, on average. While these differences were not statistically significant, a factor-analytical compound measure of all three therapy durations was. From pre-to-post-intervention, parents showed a significant reduction in stress factors. However, there were no differences between control and treatment group. A regression analysis showed links between parental stress factors and physiological development of the infants. CONCLUSION This pilot study suggests that a live-improvised interactive music therapy intervention for extremely and very preterm infants and their parents may have a beneficial effect on the therapy duration needed for premature infants before discharge from hospital is possible. The study identified components of the original physiological variables of the infants as appropriate endpoints and suggested a slight change in study design to capture possible effects of music therapy on infants' development as well. Further studies should assess both short-term and long-term effects on premature infants as well as on maternal and paternal health outcomes, to determine whether a family-centered music therapy, actually experienced as an added value to developmental care, should be part of routine care at the NICU.
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People living with type 1 diabetes point of view in COVID-19 times (COVIDT1 study): Disease impact, health system pitfalls and lessons for the future.
Tejera-Perez, C, Moreno-Pérez, Ó, Rios, J, Reyes-García, R
Diabetes research and clinical practice. 2021;:108547
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AIMS: To analyse the effects of confinement among people with type 1 diabetes (T1D) and their caregivers over the course of the COVID-19 crisis and to evaluate contemporary changes in medical assistance and patient preferences. METHODS An observational cross-sectional study designed as a self-reported web-based survey was conducted over the course of the COVID-19 pandemic. RESULTS A total of 769 subjects participated in the survey (603 people with T1D and 166 caregivers). Changes in glycaemic control were reported in 66% of cases, weight gain in 40.4% of cases and decreased exercise levels in 65.4% of cases. Of the cohort, 53% maintained contact with the healthcare team, and 23% received specific information related to COVID-19. Emotional support was requested by 17% of respondents. Regarding telemedicine, 97.9% agreed with its use with the following preferences regarding the future: telephone call (84.5%), video-call (60.6%) and platform devices (39.7%). CONCLUSIONS Over the course of the COVID-19 pandemic, at least two-thirds of people with T1D underwent changes in the management of their condition. Almost all participants agreed with the concept of telemedicine, favouring telephone and video calls as their preferred means of communication.
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The impact of heart failure on patients and caregivers: A qualitative study.
McHorney, CA, Mansukhani, SG, Anatchkova, M, Taylor, N, Wirtz, HS, Abbasi, S, Battle, L, Desai, NR, Globe, G
PloS one. 2021;(3):e0248240
Abstract
BACKGROUND Heart failure is rising in prevalence but relatively little is known about the experiences and journey of patients and their caregivers. The goal of this paper is to present the symptom and symptom impact experiences of patients with heart failure and their caregivers. METHODS This was a United States-based study wherein in-person focus groups were conducted. Groups were audio recorded, transcribed and a content-analysis approach was used to analyze the data. RESULTS Ninety participants (64 patients and 26 caregivers) were included in the study. Most patients were female (52.0%) with mean age 59.3 ± 8 years; 55.6% were New York Heart Association Class II. The most commonly reported symptoms were shortness of breath (81.3%), fatigue/tiredness (76.6%), swelling of legs and ankles (57.8%), and trouble sleeping (50.0%). Patients reported reductions in social/family interactions (67.2%), dietary changes (64.1%), and difficulty walking and climbing stairs (56.3%) as the most common adverse disease impacts. Mental-health sequelae were noted as depression and sadness (43.8%), fear of dying (32.8%), and anxiety (32.8%). Caregivers (mean age 55.5 ± 11.2 years and 52.0% female) discussed 33 daily heart failure impacts, with the top three being reductions in social/family interactions (50.0%); being stressed, worried, and fearful (46.2%); and having to monitor their "patience" level (42.3%). CONCLUSIONS There are serious unmet needs in HF for both patients and caregivers. More research is needed to better characterize these needs and the impacts of HF along with the development and evaluation of disease management toolkits that can support patients and their caregivers.
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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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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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Guidelines for caregivers and healthcare professionals on speaking to children about overweight and obesity: a systematic review of the gray literature.
Lampe, EW, Abber, SR, Forman, EM, Manasse, SM
Translational behavioral medicine. 2020;(5):1144-1154
Abstract
Caregivers and healthcare professionals (HPs) are increasingly concerned about childhood obesity. A critical consideration of caregivers and HPs is discussing weight status without provoking disordered eating. Given the complexity of these interacting concerns, major health advocacy groups have independently published guidelines for having conversations with children about overweight/obesity. The current investigation represented the first-ever systematic review of these guidelines to analyze their content, consistency, actionability, or scientific support. To conduct a systematic review, the authors performed a web-based search using the terms parent/HP, guidelines, child, and overweight/obesity that identified 59 guidelines on childhood obesity broadly, of which 13 provided explicit direction on how the caregiver or HP should approach a conversation about overweight with a child. Within these 13 guidelines, nine topic domains were identified: attitude modeling (covered by 31% of guidelines), behavior modeling (61%), dietary recommendations (54%), physical activity (46%), body acceptance and self-esteem (69%), conversation advice (92%), contact with HP (46%), talking about "weight" versus "overall health" (54%) and external factors (e.g., bullying, media) (54%). Although guidelines presented similar content, several inconsistencies in recommendations emerged. Notably, only three of the 13 guidelines referenced any scholarly sources and only a small minority of advice was actionable by caregivers or HPs. It is evident that guidelines for caregivers and HPs on speaking to children about obesity offer inconsistent advice, minimally based on empirical evidence. Future guidelines should aim to unify their messages for caregivers and HP and be better supported by empirical data.
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Patient and carer experience of nutrition care throughout treatment for head and neck cancer: a systematic qualitative review and thematic synthesis.
Hiatt, JS, Brown, TE, Banks, M, Lewis, CA, Bauer, J
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2020;(12):5633-5647
Abstract
Nutrition care plays a critical role in the provision of best practice care to head and neck cancer (HNC) patients, with carers playing an important role in supporting patients to maintain nutrition intake. This qualitative systematic review investigated patient and carer experience of nutrition care throughout and beyond HNC treatment. Five databases were systematically searched for qualitative studies reporting on patient and carer experience of nutrition care throughout HNC. Twenty-five studies including 435 patients and 46 carers were identified, revealing three themes: information and support in the healthcare setting, enteral feeding challenges and management, and life outside hospital. Findings highlight the importance of providing individualised person-centred nutrition care to patients with HNC and their carers. Further qualitative research is needed to inform healthcare professionals about the needs of patients and carers to provide appropriate support throughout the treatment trajectory across and between different treatment modalities.
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The Efficacy of Workplace Interventions on Improving the Dietary, Physical Activity and Sleep Behaviours of School and Childcare Staff: A Systematic Review.
Nathan, N, Murawski, B, Hope, K, Young, S, Sutherland, R, Hodder, R, Booth, D, Toomey, E, Yoong, SL, Reilly, K, et al
International journal of environmental research and public health. 2020;(14)
Abstract
There is a need for effective interventions that improve the health and wellbeing of school and childcare staff. This review examined the efficacy of workplace interventions to improve the dietary, physical activity and/or sleep behaviours of school and childcare staff. A secondary aim of the review was to assess changes in staff physical/mental health, productivity, and students' health behaviours. Nine databases were searched for controlled trials including randomised and non-randomised controlled trials and quasi-experimental trials published in English up to October 2019. PRISMA guidelines informed screening and study selection procedures. Data were not suitable for quantitative pooling. Of 12,396 records screened, seven articles (based on six studies) were included. Most studies used multi-component interventions including educational resources, work-based wellness committees and planned group practice (e.g., walking groups). Multiple outcomes were assessed, findings were mixed and on average, there was moderate risk of bias. Between-group differences in dietary and physical activity behaviours (i.e., fruit/vegetable intake, leisure-time physical activity) favoured intervention groups, but were statistically non-significant for most outcomes. Some of the studies also showed differences favouring controls (i.e., nutrient intake, fatty food consumption). Additional robust studies testing the efficacy of workplace interventions to improve the health of educational staff are needed.
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Language nutrition for language health in children with disorders: a scoping review.
Bang, JY, Adiao, AS, Marchman, VA, Feldman, HM
Pediatric research. 2020;(2):300-308
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The quantity and quality of child-directed speech-language nutrition-provided to typically-developing children is associated with language outcomes-language health. Limited information is available about child-directed speech to children at biological risk of language impairments. We conducted a scoping review on caregiver child-directed speech for children with three clinical conditions associated with language impairments-preterm birth, intellectual disability, and autism-addressing three questions: (1) How does child-directed speech to these children differ from speech to typically-developing children? (2) What are the associations between child-directed speech and child language outcomes? (3) How convincing are intervention studies that aim to improve child-directed speech and thereby facilitate children's language development? We identified 635 potential studies and reviewed 57 meeting study criteria. Child-directed speech to children with all conditions was comparable to speech to language-matched children; caregivers were more directive toward children with disorders. Most associations between child-directed speech and outcomes were positive. However, several interventions had minimal effects on child language. Trials with large samples, intensive interventions, and multiple data sources are needed to evaluate child-directed speech as a means to prevent language impairment. Clinicians should counsel caregivers to use high quality child-directed speech and responsive communication styles with children with these conditions.
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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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Feeding modifications and additional primary caregiver support for infants exposed to Zika virus or diagnosed with congenital Zika syndrome: a rapid review of the evidence.
Martinez, SS, Pardo-Hernandez, H, Palacios, C
Tropical medicine & international health : TM & IH. 2020;(11):1353-1361
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OBJECTIVE Infants exposed to Zika virus (ZIKV) or diagnosed with congenital Zika syndrome (CZVS) may present dysphagia, regurgitation and other feeding difficulties. They may require special feeding practices to minimise the risk of mortality, morbidity and developmental problems. Improving knowledge, skills and behaviours of caregivers may preserve health, maximise development and promote quality of life among affected infants. We reviewed intervention studies of modified feeding practices and additional primary caregiver support to improve outcomes among infants 0 to 12 months of age exposed to ZIKV or diagnosed with CZVS. METHODS Rapid review and meta-analysis. We searched PubMed/MEDLINE and contacted experts. The search is current to 18 July 2020. We planned a meta-analysis using fixed-effect models; if unfeasible, we intended to summarise studies narratively. We planned to assess risk of bias of included studies and quality of evidence using Cochrane guidance. RESULTS We identified 42 records for title and abstract screening; 14 were eligible for full-text assessment. Among these, no intervention studies were found. Eight observational studies reported on the nutritional status, feeding practices and outcomes among infants affected by ZIKV or diagnosed with CZVS. They are presented and discussed to provide a basis for future research. CONCLUSIONS While no intervention studies were found, evidence from eight observational studies highlights the need for early nutrition interventions and caregiver support among infants affected by ZIKV or diagnosed with CZSV. More research is needed to assess whether modifications of feeding practices and provision of additional primary caregiver support will impact outcomes of interest.