Primary Caregivers Of Children Research Articles

Quality of life among caregivers of children with epilepsy: A cross-sectional study at Eastern Nepal.

ObjectiveTo assess the quality of life among caregivers of children with epilepsy in a tertiary care center of eastern Nepal.MethodsA cross‐sectional study was conducted among primary caregivers of children with epilepsy, who accompanied their child in child neurology clinic. Consecutive sampling was done, and 106 respondents were interviewed. Data were collected using World Health Organization Quality of Life‐BREF (WHOQOL‐BREF) scale and analyzed using Statistical Package for the Social Sciences. Descriptive and Inferential statistics were applied.ResultsMean WHOQOL‐BREF score was 82.25 {standard deviation (SD) ±12. 11}. Transformed scores (0‐100) for each domain were 57.98 ± 14.55 in physical, 55.87 ± 13.16 in psychological, 53.12 ± 13.42 in social, and 52.52 ± 13.04 in environmental domain. Mean score for overall perception of quality of life (QOL) was 2.71 ± 0.79 and was 3.12 ± 0.75 for overall perception of health. Living below poverty line (P = .03) and poor seizure control status of children (P = .46) were significantly associated with lower total QOL score. Living below poverty line was significantly associated with low social relationship (P = .003) and environment domain (<0.001) scores.SignificanceEpilepsy has a multifaceted impact on the lives of affected people. Caring children with epilepsy is associated with enormous psychosocial effects on parents and family members. Caregivers' QOL may affect the treatment and outcome of epilepsy in children. Given the consideration to scarcity of this kind of literature in Nepalese context, this study was conducted.

Prevalence of depression and quality of life in primary caregiver of children with cerebral palsy.

Objective:Study the correlation of depression and quality of life (QoL) in primary caregivers (mothers) of children with cerebral palsy (CP).Methods:An observational cross-sectional study was conducted on a total of 203 primary caregivers (mothers) of children with CP. The depression and QoL in the caregivers were assessed using the Montgomery and Asberg Depression Rating Scale and World Health Organization Quality of Life Instrument (WHOQOL-BREF) (physical, psychological, social and environmental domains), respectively. The child’s gross motor function level was determined using the Gross Motor Functional Classification System-Expanded and Revised (GMFCS-ER). The association of depression and QoL in mothers to functional limitation in children were assessed. For statistical methods, P < 0.05 was considered significant.Results:The severity of the depression showed a statistically significant negative correlation with the physical domain (r = −0.498, P < 0.0001), psychological domains (r = −0.486, P < 0.0001), social relationships (r = −0.165, P = 0.019) and environmental domains (r = −0.195, P = 0.005). The mean QoL domains scores showed a decreasing trend with increasing motor dysfunction of the child, with a statistical association for physical (r = −0.327, P < 0.0001) and psychological domains (r = −0.440, P < 0.0001). Out of all the baseline demographic factors, the child’s age was a significant risk factor affecting the mother’s QoL (P = 0.041).Conclusion:CP, being a debilitating disease, requires around-the-clock caregiving for the child. However, caregiving causes a significant impact on the QoL with increasing severity of depression among the mothers.

Quality of Life and Burden of Caregiving Among the Primary Caregivers of Children with Disability in Rural Karnataka.

Introduction:The primary caregiver of a child with disability has to undergo a lot of difficulties in taking care of the child.Objective:To assess the quality of life and burden of caregiving of primary caregivers of children with disability registered in a CBR services in rural Karnataka.Methodology:A cross-sectional study was done among 100 children with disability and their primary caregivers. Interview schedule including socio-demography, WHOQOL-BREF, ZBI and WHODAS was used.Results:Mean age of caregivers was 36.38 of which 97% were women and 82% were mothers of children with disability. Mean age of children was 11.43 years, 56% males and most common diagnosis was multiple disabilities (38%). Mean caregiver burden according to Zarit scale was 33.27 and mean burden scores were significantly different between the disability domains of the children. Mean quality of life (QOL) scores for each domain was 49.6 in physical, 60.47 in psychological, 45.67 in social and 58.44 in environmental domains. Marital status of the caregivers was significantly associated with both physical and the social domain of the QOL. Occupation of the caregiver was significantly associated with the environmental domain and the type of disability in the children significantly affected the physical domain of the QOL of the caregivers.Conclusion:Caregiver QOL is overall poor but it was the lowest in the physical domain and higher in psychological domain. Caregiver burden scores were high and depends on the type of disability. Importance should be given to the care of the caregivers.

Women and Archives

Women and Archives Laura Engel (bio) and Emily Ruth Rutter (bio) In her essay "In Search of Our Mothers' Gardens" (1983), the novelist Alice Walker pays tribute to the anonymous women and Black women in particular whose creativity has been either neglected or unaccounted for by dominant conceptions of what counts as art or literature. As Walker queries, "But when … did my overworked mother have time to know or care about feeding the creative spirit? The answer is so simple that many of us have spent years discovering it. We have constantly looked high, when we should have looked high—and low."1 Walker discovers that "our mothers and grandmothers have, more often than not anonymously, handed on the creative spark, the seed of the flower they themselves never hoped to see: or like a sealed letter they could not plainly read" (p. 1186). Indeed, while we conjure literary ghosts and excavate the lost and found of women's "creative spark," we must always remain mindful of the voices and innovations sewn into but, like invisible thread, unseen in the archives. Put another way, while archives offer scholars like us many affordances, they are also hindered by both epistemological and material limitations. During 2020, we confronted new exigencies and constraints as we attempted to conduct research and produce scholarship during a global pandemic. For public health reasons, archives were made more inaccessible than ever. There were also fresh concerns regarding gender and labor, with scores of women (often the primary caregivers for children, the elderly, and sick friends and relatives in general) attempting to juggle new personal responsibilities alongside their active research agendas. Intersectional forms of oppression exacerbate these gender inequities. As we write, the yawning gender gaps that have always existed in the publication, recognition, documentation, curation, and scholarly analysis of women's literature—and have acutely impacted BIPOC and LGBTQ+ women's literature—are likely growing wider. Even before COVID-19 altered the world as we know it, archives were generating a great deal of academic concern among and beyond archivists. Over the last several decades, many scholars have pivoted away from conceiving of archives as simply sites to conduct research and have instead highlighted the role that vaults and repositories of documents and artifacts play in curating and preserving particular forms of knowledge at the expense of others. Indeed, as theorists Jacques Derrida and [End Page 5] Michel Foucault, historians Michel-Rolph Trouillot, Saidiya Hartman, and Marisa J. Fuentes, and literary and culture studies critics Diana Taylor, Ann Cvetkovich, Christina Sharpe, and Sara Ahmed, among others, have made clear, archives are never neutral.2 Ahmed points out that "the act of building such an archive is not exhausted or exhaustive; there are things forgotten, paths not followed."3 Archivists Joan Schwartz and Terry Cook similarly assert that "archives have the power to privilege and to marginalize. They can be a tool of hegemony; they can be a tool of resistance."4 This dual function of the archive as a vehicle for both reinforcing social inequities and engendering counternarratives frames our two special issues on "Women and Archives."5 In thinking through how to introduce these issues, we decided to record our conversation about the paradoxes that lie at the heart of archives. We especially consider how our scholarship in distinct fields—eighteenth-century British literature (Laura) and contemporary American and African American literature (Emily)—as well as our lived experiences inform our understanding of the intersection of archives and women's literature. Emily: I thought we might begin our conversation by attempting to define the archive. Laura: The archive can be both a tangible and an ephemeral thing. When we are talking about archives, we're usually talking about institutional spaces that save significant materials in one way or another. Often women's archival material was only preserved when they were connected to "men of importance." There are also more informal ways of thinking about archival collections in everything from libraries to people's own personal attics and closets. In other words, the archive can be both public and collective and a personal collection of things. Moreover, the materials can be written and narrative, but they can...

The effects of caregiver characteristics on behavioral and psychological symptoms of dementia of patients with dementia

Objective To determine the association between caregiver characteristics and behavioral and psychological symptoms of dementia (BPSD) in patients with dementia (PWD) in a Taiwanese community-dwelling population. Methods This cross-sectional study was conducted using the data of 190 patients with Alzheimer’s disease/dementia and 190 informal matched caregivers in Taiwan. BPSD were examined using the Neuropsychiatric Inventory-Questionnaire (NPI-Q). Correlation and regression analyses were used to explore associations between caregiver characteristics and the presence, severity, and distress of NPI-Q items. Results Only spouse primary caregiver was positively associated with presence of delusions in PWD. Caregiver education was positively correlated to severity of hallucinations, agitation/aggression, and apathy/indifference in PWD, while child primary caregiver was positively related to severity of disinhibition in PWD but negatively related to severity of anxiety in PWD. Spouse primary caregiver was positively related to severity of anxiety and appetite/eating in PWD while sole primary caregiver was positively related to severity of anxiety and nighttime behaviors in PWD. Caregiver education was positively correlated to distress of agitation/aggression in caregivers while child primary caregiver was positively related to distress of disinhibition in caregivers. Spouse primary caregiver was positively related to distress of anxiety and appetite/eating in caregivers while spouse caregiver was positively related to distress of nighttime behaviors in caregivers. Conclusions Caregiver education, child and spouse primary caregiver were relevant to severity of PWD and distress of caregivers of BPSD. It is suggested that healthcare professionals provide caregivers with proper individualized interventions based on these results to enhance caring quality. Key points Caregiver education was positively correlated to severity of hallucinations, agitation/aggression, and apathy/indifference, and distress of agitation/aggression. Child primary caregiver was positively related to severity and distress of disinhibition but negatively related to severity of anxiety. Spouse primary caregiver was positively related to severity and distress of anxiety and appetite/eating, and distress of nighttime behaviors

Determinants of soil-transmitted helminth infections among pre-school-aged children in Gamo Gofa zone, Southern Ethiopia: A case-control study.

Pre-school aged children (PSAC) are highly affected by soil-transmitted helminths (STH), particularly in areas where water, sanitation, and hygiene (WASH) are inadequate. Context-specific evidence on determinants of STH infections in PSAC has not been well established in the study area. This study, therefore, aimed to fill these gaps in Gamo Gofa zone, Southern Ethiopia. A community-based unmatched case-control study, nested in a cross-sectional survey, was conducted in January 2019. Cases and controls were identified based on any STH infection status using the Kato-Katz technique in stool sample examination. Data on social, demographic, economic, behavioral, and WASH related variables were collected from primary caregivers of children using pre-tested questionnaire. Determinants of STH infections were identified using multivariable logistic regression model using SPSS version 25. A total of 1206 PSAC (402 cases and 804 controls) participated in this study. Our study showed that the odds of STH infection were lowest among PSAC living in urban areas (AOR = 0.55, 95% CI: 0.39-0.79), among those from households with safe water source (AOR = 0.67, 95% CI: 0.47-0.0.93), and in those PSAC from households with shorter distance from water source (<30 minutes) (AOR = 0.51, 95% CI: 0.39-0.67). On the other hand, the odds of STH infection were highest among PSAC from households that had no functional hand washing facility (AOR = 1.36, 95% CI: 1.04-1.77), in those PSAC from households that had unclean latrine (AOR: 1.82, 95% CI: 1.19-2.78), and among those PSAC under caregivers who had lower score (≤5) on knowledge related to STH transmission (AOR = 1.85, 95% CI: 1.13-3.01). Given efforts required eliminating STH by 2030; the existing preventive chemotherapy intervention should be substantially strengthened with WASH and behavioral interventions. Thus, an urgent call for action is required to integrate context-specific interventions, particularly in rural areas.

The willingness of women of childbearing age to have a second child in lanzhou under the “universal two-child policy”

In order to understand the two-child fertility intention of women of childbearing age in lanzhou city under the comprehensive two-child policy and explore its influencing factors. Women of childbearing age in lanzhou city has been training a child (aged 18 to 49) as the research object, using chi-square analysis method, the results show that: (1) the ideal number of the women of childbearing age in lanzhou is1.87 children on average, those with a different age, household register, marital status, type of married life, family, one child age, children primary caregivers of women of childbearing age ,their ideal number of children have statistically significant difference were observed. (2) women of childbearing age in lanzhou are highly satisfied with the number of children they have. (3) under the policy of “universal two-child policy”, women of childbearing age in lanzhou have a relatively high willingness to have a second child. (4) common willingness of couples, loneliness of having one child and national policy support are the main reasons for women of childbearing age to have two children; The main reasons why women of childbearing age do not want to have a second child are that the children are not taken care of, the family economic pressure is too big, the idea of eugenics and eugenics, the work pressure is big.

Costs, burden and quality of life associated with informal caregiving for children with Lymphoma attending a tertiary hospital in Ghana

IntroductionPrimary family caregivers provide substantial support in the management of lymphoma, potentially affecting their quality of life and increasing household health care costs. Our aim was thus to determine the economic costs and quality of life of primary caregivers of children with lymphoma.MethodsThis cross-sectional study involved primary informal caregivers of children with lymphoma attending the pediatric cancer unit at Komfo Anokye Teaching Hospital. The study adopted a cost-of-illness approach to estimate the direct costs (medical and non- medical) incurred and indirect cost (productive losses) to caregivers over the one-month period preceding the data collection. Zarit Burden Interview was used to determine caregiver burden and EUROHIS-QoL tool was used to determine the quality of life of primary caregivers.ResultsThe average cost of managing lymphoma in children was estimated to be US$440.32, 97% of which were direct costs. On average, caregiver burden was 26.3 on the scale of 0 to 48. About 94% of caregivers reported high burden, with more males reporting high burden. Overall, average quality of life among caregivers was 2.20 on the 1 to 5 range. Approximately 85% of respondents reported low quality of life, with females reporting lower quality of life than males.DiscussionThis study shows that lymphoma is associated with substantial cost and increased burden, and affects quality of life of family caregivers. Future studies can explore the impact of social protection interventions (in the form of health insurance) to reduce the household economic burden of managing lymphoma in children.

Health-Related Quality of Life and Related Factors among Primary Caregivers of Children with Disabilities in Shanghai, China: A Cross-Sectional Study.

Health-related quality of life (HRQOL) of caregivers of children with disabilities (CWD) is important for both children’s rehabilitation and caregivers’ life, but the corresponding attention is far from enough in mainland China. Thus, we investigated the HRQOL of 170 caregivers and related factors in Shanghai. The 12-item Short Form Health Survey (SF-12) was used to measure HRQOL. The potential factors were collected, including child characteristics, caregiver characteristics, and environmental factors. Univariate analysis and multiple linear regression were performed to identify the key factors that could be intervened. Compared with the general population, caregivers of CWD had a slightly higher score on the physical component summary (PCS, 52.57 ± 8.41), but the score of mental component summary (MCS, 31.58 ± 7.72) was extremely low. Caregiver’s illness condition, family size, and household income were significant factors of physical HRQOL. Caregivers with illness and caregivers living in an extended family were associated with higher mental HRQOL. Whereas these two factors had opposite effects on physical HRQOL. This finding indicated poor mental HRQOL among caregivers of CWD in Shanghai and thus requiring urgent attention and intervention. Improving physical fitness, maintaining family integration, and providing financial support should be considered when developing intervention for this population.

Parental Stress in Primary Caregivers of Children with Evidence of Congenital Zika Virus Infection in Northeastern Brazil.

Despite the well-known role of parents as caregivers, few studies have addressed their health outcomes related to the Zika virus epidemic. A cross-sectional study was carried out with 146 primary caregivers of children 15-26months of age, with laboratory and/or clinical evidence of Zika infection between August and October 2017 in three Brazilian municipalities: João Pessoa and Campina Grande in the state of Paraíba and Fortaleza in the state of Ceará. Caregivers reported on their child's life and health, family circumstances and underwent screening for stress using the Parenting Stress Index-Short Form. Children were evaluated for developmental delays and clinical outcomes. Differences in the prevalence of risk factors between caregivers with high or clinically relevant stress and those with normal stress were evaluated. Of the 146 participants, 13% (n = 19) were classified as having high or clinically relevant stress, all of them mothers. The two risk factors significantly and independently associated with high levels of stress, compared with individuals with normal stress levels, were "reporting difficulty in covering basic expenses" (adjusted OR 3.6 (95% CI 1.1-11.8; p = 0.034)) and "having a child with sleep problems" (adjusted OR 10.4 (95% CI 1.3-81.7; p = 0.026)). Some factors seem to contribute significantly more than others to the level of stress experienced by caregivers of children with evidence of Zika virus congenital infection. Interventions and preventive strategies should also target caregivers, who in turn will be able to respond to the unique characteristics of their child.

Caregiver-Reported Presentation of Severe Food-Induced Allergic Reactions in Infants and Toddlers

Recognizing anaphylaxis in infants and toddlers can be challenging for health care providers and caregivers, and current diagnostic criteria and anaphylaxis action plans do not specifically address this younger population. To describe symptoms and signs observed by primary caregivers of infants and toddlers during severe food-induced allergic reactions. We conducted a national online survey among primary caregivers of children who experienced a severe food-induced allergic reaction when less than 36 months of age. Respondents who were present during the child's most severe reaction were asked to report symptoms and signs observed. The survey asked about infant- and toddler-specific symptoms and signs in lay language for caregivers. Data were compared with patient-reported data from past studies to identify distinct patterns among the younger population. The survey was completed for 374 children (193 infants, 181 toddlers). The most common symptoms and signs reported were skin reactions (90%), facial and extremity swelling (59%), gastrointestinal issues (51%), and coughing/wheezing (45%). Infants (aged <12 months) more frequently experienced skin reactions, skin mottling, and ear pulling/scratching or putting fingers in ears, as compared with toddlers (aged 12-35 months). Toddlers experienced throat itching and coughing/wheezing more frequently than infants. Anaphylaxis presentation demonstrates similarities and differences in infants and toddlers. Modifying the terminology used in the current criteria allowed for reporting of symptoms and signs of anaphylaxis that are more common in infants and toddlers. Diagnostic criteria, clinical guidelines, and anaphylaxis action plans may be enhanced to address this young, often nonverbal, population.

Money matters: a multicenter cross-sectional study of depressive symptoms among the caregivers of children on peritoneal dialysis in Mainland China

BackgroundThe caregivers of children on peritoneal dialysis face heavy care burdens and may have a high risk of depression. This study aimed to describe the prevalence and severity of depression and identify its related demographic and socioeconomic factors in the caregivers of children on peritoneal dialysis in China.MethodsA multicenter cross-sectional study was conducted in four pediatric dialysis centers in four tertiary children’s hospitals in mainland China. Primary caregivers of children with end-stage kidney disease and currently on peritoneal dialysis were screened and recruited from December 2018 to July 2019. A self-developed questionnaire and the Self-Rating Depression Scale (SDS) were administered to the participants by a trained nurse in each center. The chi-square test or Fisher’s exact test, one-way ANOVA, and the Mann-Whitney U test were used to compare the prevalence of depressive symptoms by demographic features. A multivariate logistic regression analysis was used to identify factors related to depressive symptoms in caregivers of children on peritoneal dialysis.ResultsOne hundred twenty-one caregivers were included in the data analysis. The mean age of the caregivers was 40.1 ± 8.1 years. More than 75% of the participants were female, married, and unemployed. The overall prevalence of depressive symptoms was 59%. In total, 46 (38%), 20 (17%) and 5 (4%) caregivers reported mild, moderate, and severe depressive symptoms, respectively. In the univariate analysis, caregivers with an average household income per month under 4000 RMB and caregivers of children undergoing laparoscopic surgery had a higher prevalence of depressive symptoms. Characteristics such as treatment center, duration on PD, PD modalities, and history of peritonitis episodes showed no difference in terms of the prevalence of depressive symptoms. The multivariate logistic regression analysis demonstrated that an average household income per month under 4000 RMB was the associated factor for caregivers’ depressive symptoms.ConclusionsThe caregivers of children on peritoneal dialysis in mainland China were socially vulnerable and experienced depression. Those who had a higher average household income were less vulnerable to depression.

Making Sense of the Nonsense: A Narrative Inquiry Into The Meaning Related Processes of Resiliency in Caregivers of Children With Traumatic Brain Injury

To elucidate: 1) how primary caregivers of children with TBI engage in meaning-related processes of building resiliency and 2) the ways that caregivers’ belief systems changed following the TBI to promote resiliency.

Adherence to 24-hour movement guidelines in low-income Brazilian preschoolers and associations with demographic correlates.

The importance of movement behaviors for health is well known, although few studies have examined the adherence to movement guidelines in low-income preschoolers from a middle-income country, as Brazil. This study reports the proportion of preschoolers meeting the 24-hour movement guidelines and investigates its associations with demographic correlates in Brazilian low-income preschoolers. Two hundred and seventy preschoolers (132 boys, means age=3.97 ± 0.80) provided physical activity (PA) data (Actigraph wGT3X). Sleep duration, screen time, and social correlates were parent-reported. Preschoolers were classified as compliant/not compliant with the 24-hour movement guidelines. Relationships between compliance with movement behaviors guidelines and demographic correlates were calculated using a network analysis (Mplus 8.0; Rstudio). Preschoolers were active (273.52 ± 62.08 minutes/day of total PA), though moderate-to-vigorous physical activity (MVPA) time was below the guideline (58.68 ± 22.51 minutes/day); spent more than the recommended 60 minutes/day on screen time (169.91 ± 97.07 minutes/day); and slept less than 10hours per night (9.44 ± 1.12 hours/day). Only 3% of the sample complied with the guidelines. PA showed the highest compliance (43%), compared to sleep duration (35%) and screen time (15%). Male sex was related to adherence to MVPA recommendations, while female sex, with adherence to total PA recommendations. Child's primary caregiver was the most important centrality indicator in the network. Only 3% of the assessed preschoolers are compliant with the 24-hour movement behaviors guidelines. Strategies to promote adherence to movement behaviors among low-income preschoolers should consider child's primary caregivers to support movement behaviors.

The Seychelles Child Development Study of methyl mercury from fish consumption: analysis of subscales from the Child Behaviour Checklist at age 107 months in the main cohort

Methyl mercury (MeHg) is neurotoxic and all fish contain at least trace amounts. Consequently, prenatal or fetal exposure occurs when pregnant women consume fish and children are exposed postnatally when they breastfeed or consume fish. However, the level of exposure at which toxicity occurs is presently unknown. Since behavioural endpoints can be sensitive indicators of toxic exposure, we administered the Child Behaviour Checklist (CBCL) to measure behaviour as part of a prospective, longitudinal, double blind study (n=779) of prenatal MeHg exposure, the Seychelles Child Development Study (SCDS). The CBCL Total T score was a primary endpoint at 66 and 107 month evaluations of the cohort and showed no association with prenatal or postnatal MeHg exposure. This paper reports the results of a secondary analysis of the CBCL subscales to see if specific aspects of behaviour might show associations. The SCDS main cohort was enrolled in 1989-90 and evaluated on five occasions through 107 months of age. The child's primary caregiver completed the CBCL at the 107 month evaluation. Prenatal exposure was determined by measuring total mercury (THg) in maternal hair growing during pregnancy and recent postnatal exposure by analysing the child's hair taken at the 107 month evaluation. Analysis included linear and nonlinear multiple regression models. For prenatal MeHg exposure, the Social Problems subscale was significantly associated and the Somatic Complaints subscale was marginally associated. Both were beneficial associations. For postnatal exposure the Thought Problems subscale was associated in an adverse direction. This secondary analysis identified a small number of subtle beneficial and adverse associations with prenatal and postnatal MeHg exposure for specific CBCL subscales. These analyses provide no evidence for an adverse effect of prenatal exposure. The adverse postnatal association is difficult to interpret because we measured only recent (about one month) exposure and no adjustment was made for the multiplicity of endpoints.

Gastrostomy and quality of life in children with intellectual disability: a qualitative study

ObjectiveChildren with intellectual disability and marked feeding difficulties may undergo gastrostomy insertion to assist with their nutritional and medication needs. Use has increased recently for younger children, and it is...

Enrolment of children in clinical research: Understanding Ghanaian caregivers’ perspectives on consent/assent procedures, and their attitudes towards storage of biological samples for future use

Child assent is recommended in addition to parental consent when enrolling children in clinical research; however, appreciation and relevance ascribed to these concepts vary in different contexts, and information on attitudes towards storage of biological samples for future research is limited, especially in developing countries. We assessed caregivers’ understanding and appreciation of consent and assent procedures, and their attitudes towards use of stored blood samples for future research prior to enrolling a child in clinical research. A total of 17 in-depth interviews were conducted with primary caregivers of children (fathers [n = 3], mothers [n = 12], and grandmothers [n = 2]) at enrolment or on the immediate follow-up date. All caregivers recalled significant amount information from the study information sheet and were able to appropriately link such information to the consent process. While all participants confirmed information received prior to blood sampling as adequate, a few noted that the purpose was not sufficiently well communicated. Caregivers felt children were cognitively vulnerable, and prone to decisions that were not necessarily in their best interest. Nearly all caregivers felt it was their right and responsibility to overrule objections from their ward’s regarding enrolment into specific study or receipt of a therapeutic procedure. There were no objections or concerns regarding use of stored biological samples for future research purposes. There is thus, a need to improve understanding of caregivers on the information provided during the informed consent process. Context-specific studies on the age of assent in specific populations are needed.

Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable

IntroductionChildren with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial.MethodsMTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various “modules,” which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches).ResultsWe enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes.ConclusionMind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASDTrial registrationThis study is registered with ClinicalTrials.gov: NCT03711799.

A descriptive analysis of reasons for early childhood caries among a selected group of Sri Lankan preschool children

Introduction: Dental caries is a microbial disease of the calcified tissues of the teeth. When a child has one or more decayed missing (due to caries) or filled tooth surfaces (DMFT) in any primary teeth by 71 months or younger it is defined as early childhood caries (ECC). Objectives: To analyse the dietary habits and oral hygienic practices among a selected group of preschool children who were diagnosed to suffer from ECC, using their primary caregiver responses. Method: A cross sectional study was conducted among primary caregivers of children 1-5 years old with proven dental caries who were referred to the Dental Institute Maharamaga from September to December 2018. Primary caregivers of mentally retarded children and caregivers who were not familiar with the child’s routine were excluded. Results:Total number of primary caregivers involved in the study was 213. Among them 194 (91%) were mothers. Among the children included in the study, 104 (51.2%) were girls. The children had a mean age of 42 months with the majority belonging to the 49-60 month age group. Majority (60%) of children were introduced to use a toothbrush between 1-2 years of age and only 2 (0.9%) started to use a toothbrush after 2 years of age. The majority (86.9%) of caregivers stated that their children do tooth brushing twice a day and 85.9% stated that they themselves brush their child’s teeth. The majority (98.1%) of caregivers stated that they use toothpaste to brush their child’s teeth and 88% stated that the toothpaste they use contains fluoride. Ninety seven (45.5%) caregivers were still breast feeding at the time of the study and of them 41(42.3%) breast fed during sleep. Only 52 (24.4%) children were bottle fed. Of the carers of bottle-fed children, 56% stated that their children bottle-fed during bedtime. Thirty two (61.5%) caregivers of bottle-fed children used to add sugar to child’s milk bottle. Furthermore, 32 (61.5%) caregivers had not practised mouth washing after bottle-feeding. Conclusions: In this study at the Dental Institute Maharamaga, 213 children had proven ECC despite the majority of caregivers introducing their children to the tooth brush between 1-2 years of age, themselves brushing their children’s teeth twice a day and using toothpaste containing fluoride. Almost all children consumed sugary food items, such as biscuits and sugar containing milk products more than once daily. Two other possible reasons for the high rate of ECC in this study were not washing the children’s mouths after they consumed sugary food and breast feeding during sleep. Sri Lanka Journal of Child Health, 2020; 49(3): 246-250

Executive behavior and functional abilities in children with perinatal stroke and the associated caregiver impact

ABSTRACT Perinatal stroke is the most common form of stroke in childhood and is followed by a variety of outcomes, with many children experiencing specific functional and neuropsychological deficits. The association of these outcomes with the psychosocial impact caregivers face is not well documented. The goal of our pilot study was to examine caregivers’ perception of executive behavior and functional abilities among children with perinatal stroke, and how these outcomes impact the caregivers. We administered three questionnaires to primary caregivers of children with perinatal stroke to obtain caregiver-reported measures of (1) executive behavior of their child (Behavior Rating Inventory of Executive Function, Second Edition), (2) the functional abilities of their child (Pediatric Evaluation of Disability Inventory Computer Adaptive Test), and (3) the psychosocial impact experienced by the caregiver themselves (Parental Outcome Measure). Participants included 20 children (mean age = 9.3 years, range = 6–16 years) with perinatal stroke and their primary caregivers. Functional abilities in the children were rated as clinically impaired in the domains of daily activities and mobility. Half of the children exhibited clinically impaired ratings on at least one executive behavior domain, but the mean scores for these domains did not reach clinically impaired levels. Greater ratings of problems in daily activities for the child was associated with greater caregiver guilt (r = −0.55, p = 0.02). Caregivers of children with perinatal stroke who experience limitations in performing daily activities should be more closely monitored for adverse impact and be provided the necessary support and education to alleviate the associated guilt.