Search results for: caregiver

Authors: L. Bernabeo, T. Loftus

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Many children often experience phases of picky eating, food aversions and/or avoidance. For families with children who have special needs, these experiences are often exacerbated, which can lead to feelings that negatively impact a caregiver’s relationship with their child. Within the scope of speech language pathology practice, knowledge of both emotional and feeding development is key. This paper will explore the significance of “messy play” within typical feeding development, and the challenges that may arise if a child does not have the opportunity to engage in this type of exploratory play. This paper will consider several contributing factors that can result in a “picky eater.” Further, research has shown that individuals with special needs, including autism, possess a neurological makeup that differs from that of a typical individual. Because autism is a disorder of relating and communicating due to differences in the limbic system, an individual with special needs may respond to a typical feeding experience as if it is a traumatic event. As a result, broadening one’s dietary repertoire may seem to be an insurmountable challenge. This paper suggests that introducing new foods through exploratory play can help broaden and strengthen diets, as well as improve the feeding experience, of individuals with autism. The DIRFloortimeⓇ methodology stresses the importance of following a child's lead. Within this developmental model, there is a special focus on a person’s individual differences, including the unique way they process the world around them, as well as the significance of therapy occurring within the context of a strong and motivating relationship. Using this child-centered approach, we can support our children in expanding their diets, while simultaneously building upon their cognitive and creative development through playful and respectful interactions that include exposure to foods that differ in color, texture, and smell. Further, this paper explores the importance of exploration, self-feeding and messy play on brain development, both in the context of typically developing individuals and those with disordered development.

Keywords: development, feeding, floortime, sensory

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Authors: Ana M. G. Sperandio, Adriana A. C. Rosa, Jussara C. Guarnieri

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This study consists of a research of the Post Occupancy Assessment (POA) of Medicinal Gardens' project of Urban Social Center’s square, in the city of 'Santa Barbara d'Oeste', located in the interior of Sao Paulo, Brazil. In view of the fact that community gardens, as well as medicinal gardens, are based on innumerable functions. The addition to the pedagogical function rescues people from their origins through (re)contact with the land, as a vehicle for social integration. Bearing in mind the project has the potential to fight hunger among the low-income population, to treat some diseases, also works as a strategy of environmental recovery especially of idle land. Such as very often only accumulate weeds and garbage, and therefore, must be considered in the Municipal Master Plan for the activity to be regulated. Objective: Identify on implantation the medicinal plants' value and principles for the promotion of a healthy city. Methodology: Application of the walkthrough, where it is possible to affirm that this instrument has three routes: one officer applied within the urban social center and two complementary ones, one being about 3 miles and the other being almost 5,5 miles. Results: Through a dialogical course, one can observe the benefits that the community medicinal gardens bring to the local population. In addition, it is consistent with the proposal for the community to be enabled to access collective care with home orientations that rescue the local and regional culture making the physical environment. This project aims at promoting more pleasant and inclusive through the actions of the caregiver, local leadership and the co-participation of local government. Although with the aim of increasing the supply value and improving the living conditions of social groups and interrelationship. Conclusion: This type of urban intervention, which articulates social participation, rescue of medicinal cultures and local knowledge, intersectoriality, social inclusion, among other premises connected with health promotion, and the city presents a potential for reverberation of practices in social networks with the objective of meeting the healthy city strategies.

Keywords: healthy city, healthy urban planning, medicinal gardens, social participation

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Authors: M. D. Antoine

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Despite the widespread use of complementary and alternative medicine (CAM) for autistic children, little is known about the communication flow between the different parties involved in autism care (e.g., parents/caregivers, conventional providers, alternative practitioners). This study aimed to describe how communication occurs through the first year following an autism spectrum disorder (ASD) diagnosis to identify challenges and potential barriers to communication within the healthcare system in Ottawa, Canada. From an ecological perspective, we collected qualitative data through 12 semi-structured interviews with six parents/caregivers, three conventional providers (e.g., family doctor, neurodevelopmental pediatrician, psychologist), and three alternative practitioners (e.g., naturopath, occupational therapist, speech and language pathologist) operating in Ottawa. We interpreted the data using thematic analysis. Findings revealed communication challenges between the parents/caregivers and conventional providers while they experience better communication flow with fewer challenges in alternative care settings. However, parents/caregivers are the only links between the health professionals of both streams. From the five contexts examined: organizational, interpersonal, media, cultural, and political-legal, we found four themes (provider knowledge, care integration, flexible care, and time constraints) underlining specific barriers to communication flow between the parties involved in the care of autistic children. The increasing interest in alternative medicine is forcing changes in the healthcare system. Communications occur outside the norms making openings for better communication and information-sharing increasingly essential. Within the identified themes in the current study, the necessity for better communication between all parties involved in the care of autistic children is evident. More ASD and CAM-related training for providers would support effective parent/caregiver-provider communication. The findings of the current study contribute to a better understanding of the role of communication in the care management of autism, which has implications for effective autism care.

Keywords: alternative medicine, autism care management, autism spectrum disorder, conventional medicine, parent-provider communication

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Authors: Hanna Gulema, Meaza Demissie, Alemayehu Worku, Tesfaye Assebe Yadeta, Yemane Berhane

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Background: In patriarchal societies, female caregivers decide on food allocation within a family based on prevailing gender and age norms, which may lead to inequality that does not favor young adolescent girls. This study evaluated the effect of a community-based social norm intervention involving female caregivers in West Hararghe, Ethiopia. The intervention was engaging female caregivers along with other adult influential community members to deliberate and act on food allocation social norms in a process referred to as Social Analysis and Action (SAA). Method: We used data from a large quasi-experimental study to compare family eating practices between those who participated in the Social Analyses and Action intervention and those who did not. The respondents were female caregivers in households with young adolescent girls (ages 13 and 14 years). The study’s outcome was the practice of family eating together from the same dish. The difference in difference (DID) analysis with the Mixed effect logistic regression model was used to examine the effect of the intervention. Result: The results showed improved family eating practices in both groups, but the improvement was greater in the intervention group. The DID analysis showed an 11.99 percentage points greater improvement in the intervention arm than in the control arm. The mixed-effect regression produced an adjusted odds ratio of 2.08 (95% CI [1.06–4.09]) after controlling selected covariates, p-value 0.033. Conclusions: The involvement of influential adult community members significantly improves the family practice of eating together in households where adolescent girls are present in our study. The intervention has great potential to minimize household food allocation inequalities and thus improve the nutritional status of young adolescents. Further studies are necessary to evaluate the effectiveness of the intervention in different social norm contexts to formulate policy and guidelines for scale-up.

Keywords: family eating practice, social norm intervention, adolescence girls, caregiver

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Authors: Antonio Lopez-Villegas, Rafael Bautista-Mesa, Emilio Robles-Musso, Daniel Catalan-Matamoros, Cesar Leal-Costa

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Objectives: The purpose of this trial was to evaluate the burden borne by and the costs to informal caregivers of users with telemonitoring of pacemakers. Methods: This is a controlled, non-randomised clinical trial, with data collected from informal caregivers, five years after implantation of pacemakers. The Spanish version of the Survey on Disabilities, Personal Autonomy, and Dependency Situations was used to get information on clinical and social characteristics, levels of professionalism, duration and types of care, difficulties in providing care, health status, economic and job aspects, impact on the family or leisure due to informal caregiving for patients with pacemakers. Results: After five years of follow-up, 55 users with pacemakers finished the study. Of which, 50 were helped by a caregiver, 18 were included in the telemonitoring group (TM) and 32 in the conventional follow-up group (HM). Overall, females represented 96.0% of the informal caregivers (88.89% in TM and 100.0% in HM group). The mean ages were 63.17 ± 15.92 and 63.13 ± 14.56 years, respectively (p = 0.83) in the groups. The majority (88.0%) of the caregivers declared that they had to provide their services between 6 and 7 days per week (83.33% in TM group versus 90.63% in HM group), without significant differences between both groups. The costs related to care provided by the informal caregivers were 47.04% higher in the conventional follow-up group than in the TM group. Conclusions: The results of this trial confirm that there were no significant differences between the informal caregivers regarding to baseline characteristics, workload and time worked in both groups of follow-up. The costs incurred by the informal caregivers providing care for users with pacemakers included in telemonitoring group are significantly lower than those in the conventional follow-up group. Trial registration: ClinicalTrials.gov NCT02234245. Funding: The PONIENTE study, has been funded by the General Secretariat for Research, Development and Innovation, Regional Government of Andalusia (Spain), project reference number PI/0256/2017, under the research call 'Development and Innovation Projects in the Field of Biomedicine and Health Sciences', 2017.

Keywords: costs, disease burden, informal caregiving, pacemaker follow-up, remote monitoring, telemedicine

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Authors: B. Nair, S. Singh

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Oral health behaviors such as dietary preferences and tooth brushing are acquired during a child’s primary socialization period yet many oral health promotion interventions are implemented without taking into account the role and impact of parental influence in supporting healthy oral health behaviors. The aim and objective of this study was to determine the relationship between parental income and level of education with knowledge, attitudes and perceptions of oral health care practices. Methods: The study design was cross-sectional and exploratory, and data collection occurred in two phases. Phase 1 comprised of a self-administered questionnaire. The sample consisted of parents of 313 Grade 1 learners aged between 5-6 years old attending one of twelve selected public primary schools in the Chatsworth Circuit, Durban, South Africa. Phase 2 comprised of focus group discussions held at 5 purposively selected schools. Data collection comprised of a semi-structured face-to-face group interview with the objective of obtaining a deeper understanding of parental knowledge, attitudes and perceptions of dental caries. Results and Discussion: Almost 56% of participants earned a monthly income of less than R6000 (600 US dollars). Nearly three quarters (77.5%) of participants indicated that they did not have medical aid/insurance scheme. More than three-quarters of the participants (76.6%) identified diet as being the primary cause of decayed teeth. More than half of the study sample (56.1%) indicated that milk teeth were important and that rotten teeth (74.6%) could affect the child’s health. Almost half (49.8%) of participants reported that “bad teeth” were inherited. With more than two-thirds of the participants (77.7%), having at most a high school education, there was a correlation between the level of the caregiver’s education and the oral health care of the child. The analysis of the correlation between a child having decayed teeth and income (p=.007); and the manner in which the income is received (p=.003) was statistically significant. The results indicate that more effort needs to be placed in understanding parental knowledge, perceptions and attitudes towards dental caries. Parental level of education, income and oral health literacy is shown to be related to attitudes, and perceptions towards dental caries and its subsequent preventive measures. These findings have important implications for oral health planning at community and facility-based levels.

Keywords: oral health prevention, parental education, dental caries, attitudes and perceptions

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Authors: Ayelet Gur

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Background: In recent years we are witnessing a welcome trend in which more children/persons with disabilities are living at home with their families and within their communities. This trend is related to various policy innovations as the UN Convention on the Rights of People with Disabilities that reflect a shift from the medical-institutional model to a human rights approach. We also witness the emergence of family centered approaches that perceive the family and not just the individual with the disability as a worthy target of policy planning, implementation and evaluation efforts. The current investigation aims to explore economic, psychological and social factors among households of families of children or adults with intellectual disabilities in Israel and to present policy recommendation. Methods: A national sample of 301 households was recruited through the education and employment settings of persons with intellectual disability. The main caregiver of the person with the disability (a parent) was interviewed. Measurements included the income and expense surveys; assets and debts questionnaire; the questionnaire on resources and stress; the social involvement questionnaire and Personal Wellbeing Index. Results: Findings indicate significant gaps in financial circumstances between households of families of children with intellectual disabilities and households of the general Israeli society. Households of families of children with intellectual disabilities report lower income and higher expenditures and loans than the general society. They experience difficulties in saving and coping with unexpected expenses. Caregivers (the parents) experience high stress, low social participation, low financial support from family, friend and non-governmental organizations and decreased well-being. They are highly dependent on social security allowances which constituted 40% of the household's income. Conclusions: Households' dependency on social security allowances may seem contradictory to the encouragement of persons with intellectual disabilities to favor independent living in light of the human rights approach to disability. New policy should aim at reducing caregivers' stress and enhance their social participation and support, with special emphasis on families of lower socio-economic status. Finally, there is a need to continue monitoring the economic and psycho-social needs of households of families of children with intellectual disabilities and other developmental disabilities.

Keywords: disability policy, family policy, intellectual and developmental disabilities, Israel, households study, parents of children with disabilities

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Authors: Kamrun Nahar Koly, Saimul Islam

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Overweight and obesity is increasing at an alarming rate and a leading risk factor for morbidity throughout the world. In a country like Bangladesh where under nutrition and overweight both co-exist at the same time, but this issue has been underexplored as expected. The aim of the present study was to assess the knowledge, attitudes and identify the barriers of the physicians regarding overweight and obesity management on an urban hospital of Dhaka city in Bangladesh. A simple cross sectional study was conducted at two selected government and two private hospital to assess the knowledge, attitude and common barriers regarding overweight and obesity management among healthcare professionals. One hundred and fifty five physicians were surveyed. A standard questionnaire was constructed in local language and interview was administrated. Among the 155 physicians, majority 53 (34.20%) were working on SMC, 36 (23.20%) from DMC, 33 (21.30%) were based on SSMC and the rest 33 (21.30%) were from HFRCMH. Mean age of the study physicians were 31.88±5.92. Majority of the physicians 80 (51.60%) were not able to answer the correct prevalence of obesity but also a substantial number of them 75(48.40%) could mark the right answer. Among the physicians 150 (96.77%) reported BMI as a diagnostic index for overweight and obesity, where as 43 (27.74%) waist circumference, 30 (19.35%) waist hip ratio and 26 (16.77%) marked mid-arm circumference. A substantial proportion 71 (46.70%) of the physicians thought that they do not have much to do controlling weight problem in Bangladesh context though it has been opposed by 42 (27.60%) of the physicians and 39(25.70%) was neutral to comment. The majority of them 147 (96.1%) thought that a family based education program would be beneficial followed by 145 (94.8%) physicians mentioned about raising awareness among mothers as she is the primary caregiver. The idea of a school based education program will also help to early intervene referred by 142 (92.8%) of the physicians. Community based education program was also appreciated by 136 (89.5%) of the physicians. About 74 (47.7%) of them think that the patients still lack in motivation to maintain their weight properly at the same time too many patients to deal with can be a barrier as well assumed by 73 (47.1%) of them. Lack of national policy or management guideline can act as an obstacle told by 60 (38.7%) of the physicians. The relationship of practicing as a part of the general examination and chronic disease management was statistically significant (p<0.05) with physician occupational status. As besides, perceived barriers like lack of parents support, lack of a national policy was statistically significant (p<0.05) with physician occupational status. For the young physician, more training programme will be needed to transform their knowledge and attitude into practice. However, several important barriers interface for the physician treatment efforts and need to address.

Keywords: obesity management, physician, awareness, barriers, Bangladesh

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Authors: Noor Ismael, Somaya Malkawi, Sherin Al Awady, Taleb Ismael

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Background/Significance: Cancer is a serious health condition that affects individuals’ quality of life during and after the course of this condition. Children who have survived cancer and their caregivers may deal with residual physical, cognitive or social disabilities. There is little research on caregivers’ health and wellbeing after cancer. To the authors’ best knowledge; there is no specific research about how caregivers cope with everyday stressors after cancer. Therefore, this study aimed to explore the coping strategies that caregivers of children who have survived cancer utilize to overcome everyday stressors. Methods: This study utilized a descriptive survey design. The sample consisted of 103 caregivers, who visited the health and wellness clinic at a national cancer center (additional demographics are presented in the results). The sample included caregivers of children who were off cancer treatments for at least two years from the beginning of data collection. The institution’s internal review board approved this study. Caregivers who agreed to participate completed the survey. The survey collected caregiver reported demographic information and the Brief COPE which measures caregivers' frequency of engaging in certain coping strategies. The Brief COPE consisted of 14 coping sub-scales, which are self-distraction, active coping, denial, substance use, use of emotional support, use of instrumental support, behavioral disengagement, venting, positive reframing, planning, humor, acceptance, religion, and self-blame. Data analyses included calculating sub-scales’ scores for the fourteen coping strategies and analysis of frequencies of demographics and coping strategies. Results: The 103 caregivers who participated in this study were 62% mothers, 80% married, 45% finished high school, 50% do not work outside the house, and 60% have low family income. Result showed that religious coping (66%) and acceptance (60%) were the most utilized coping strategies, followed by positive reframing (45%), active coping (44%) and planning (43%). The least utilized coping strategies in our sample were humor (5%), behavioral disengagement (8%), and substance-use (10%). Conclusions: Caregivers of children who have survived cancer mostly utilize religious coping and acceptance in dealing with everyday stressors. Because these coping strategies do not directly solve stressors like active coping and planning coping strategies, it is important to support caregivers in choosing and implementing effective coping strategies. Knowing from our results that some caregivers may utilize substance use as a coping strategy, which has negative health effects on caregivers and their children, there must be direct interventions that target these caregivers and their families.

Keywords: caregivers, cancer, stress, coping

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Authors: Athena Pedro, Zandile Batweni, Laura Bradfield, Michael Dare, Ashley Nyman

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The rapid growth and development of an infant in the first 1000 days of life means that this time period provides the greatest opportunity for a positive developmental impact on a child’s life socially, emotionally, cognitively and physically. Current research is being focused on children in the first 1000 days, but there is a lack of research and understanding of mothers and their experiences during this crucial time period. Thus, it is imperative that more research is done to help better understand the experiences of mothers during the first 1000 days of their child’s life, as well as gain more insight into mothers’ knowledge regarding this time period. The first 1000 days of life, from conception to two years, is a critical period, and the child’s attachment to his or her mother or primary caregiver during this period is crucial for a multitude of future outcomes. The aim of this study was to explore mothers’ understanding and experience of the first 1000 days of their child’s life, specifically looking at attachment in the context of Bowlby and Ainsworths’ attachment theory. Using a qualitative methodological framework, data were collected through semi-structured individual interviews with 12 first-time mothers from low-income communities in Cape Town. Thematic analysis of the data revealed that mothers articulated the importance of attachment within the first 1000 days of life and shared experiences of how they bond and form attachment with their babies. Furthermore, these mothers expressed their belief in the long-term effects of early attachment of responsive positive parenting as well as the lasting effects of poor attachment and non-responsive parenting. This study has implications for new mothers and healthcare staff working with mothers of new-born babies, as well as for future contextual research. By gaining insight into the mothers’ experiences, policies and intervention efforts can be formulated in order to assist mothers during this time, which ultimately promote the healthy development of the nation’s children and future adult generation. If researchers are also able to understand the extent of mothers’ general knowledge regarding the first 1000 days and attachment, then there will be a better understanding of where there may be gaps in knowledge and thus, recommendations for effective and relevant intervention efforts may be provided. These interventions may increase knowledge and awareness of new mothers and health care workers at clinics and other service providers, creating a high impact on positive outcome. Thus, improving the developmental trajectory for many young babies allows them the opportunity to pursue optimal development by reaching their full potential.

Keywords: attachment, experience, first 1000 days, knowledge, mothers

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Authors: Catherine Begin, Jeanne Berthod, Manon Truchon

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In Quebec, there are more than 8,000 community organizations throughout the province, representing more than 72,000 jobs. Working in a community setting involves several particularities (e.g., contact with the suffering of users, feelings of powerlessness, institutional pressure, unstable funding, etc.), which can put workers at risk of fatigue, burnout, and psychological distress. A 2007 study shows that 52% of community workers surveyed have a high psychological distress index. The Ricochet project, founded in 2019, is an initiative aimed at providing various care and services to community workers in the Quebec City region, with a global health approach. Within this program, mindful self-compassion training (MSC) is offered at a low cost. MSC is one of the effective strategies proposed in the literature to help prevent and reduce burnout. Self-compassion is the recognition that suffering, failure, and inadequacies are inherent in the human experience and that everyone, including oneself, deserves compassion. MSC training targets several behavioral, cognitive, and emotional learnings (e.g., motivating oneself with caring, better managing difficult emotions, promoting resilience, etc.). A mixed-method evaluation was conducted with the participants in order to explore the effects of the training on community workers in the Quebec City region. The participants were community workers (management or caregiver). 15 participants completed satisfaction and perceived impact surveys, and 30 participated in structured interviews. Quantitative results showed that participants were generally completely satisfied or satisfied with the training (94%) and perceived that the training allowed them to develop new strategies for dealing with stress (87%). Participants perceived effects on their mood (93%), their contact with others (80%), and their stress level (67%). Some of the barriers raised were scheduling constraints, length of training, and guilt about taking time for oneself. The qualitative results show that individuals experienced long-term benefits, as they were able to apply the tools they received during the training in their daily lives. Some barriers were noted, such as difficulty in getting away from work or problems with the employer, which prevented enrollment. Overall, the results of this evaluation support the use of MSC (mindful self-compassion) training among community workers. Future research could support this evaluation by using a rigorous design and developing innovative ways to overcome the barriers raised.

Keywords: mindful self-compassion, community workers, work stres, burnout, wellbeing at work

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Authors: Linneth Nkateko Mabila, Patrick Hulisani Demana, Tebogo Maria Mothiba

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Background: Sustaining adherence to antiretroviral therapy (ART) over the long term by people, especially children living with Human-Immunodeficiency Virus (HIV), requires accurate and consistent monitoring, and this is a particular challenge for countries in sub-Saharan Africa. However, the regularity and punctuality in monthly antiretroviral treatment collections indicate medication adherence to a certain extent since it has been revealed to be a significant determinant of the outcome of ART. Aim: This study assessed and described the pattern of monthly antiretroviral treatment collections among a cohort of virally unsuppressed HIV-positive children initiated and managed on ART in the rural public clinics of Mopani District, Limpopo, and explored the nurses' perceptions and views of the findings. Methods: A facility-based mixed-methods study was conducted to assess the honoring of scheduled monthly treatment collection practices by a cohort of HIV-positive children under 15 years initiated and managed on ART by Nurse Initiated Management of Antiretroviral Treatment (NIMART)-trained professional nurses (PNs) from 01 January 2015 to 31 December 2015 in public PHC clinics of Mopani District Municipality. This was followed by the exploration of the nurses' perceptions and views regarding this issue to share their experiences and knowledge acquired through managing these children on ART. Results: From a total of 7105 analysable visits, only 44% (3134) were honored as scheduled, with 40% (2828) of children presenting to the clinics after the scheduled appointment date – they missed their appointments, and 11% (768) of treatment collections that took place before the scheduled appointment date. This finding was further confirmed by 90% (97) of the nurses, who reported that they have children who miss scheduled appointments in their public clinics. The primary reasons for children missing appointments were related to caregivers' forgetfulness and conflict between the school schedule and the dates of clinic visits. Conclusion: We confirmed a high prevalence of non-adherence to scheduled monthly ART collections and the existence of health system, social, and caregiver-related factors that threaten treatment adherence and proper clinical outcomes. These findings suggest an urgent need for intervention since non-adherence to ARV therapy can be life-threatening to the child and poses the danger of reduced life expectancy.

Keywords: antiretroviral therapy (art), nimart, virally unsuppressed children, missed appointments

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Authors: Chukwuka Justus Iwegbu

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Background: A major concern facing the world is providing senior citizens, individuals with disabilities, and other vulnerable groups with high-quality care. This issue is more serious in Nigeria's North Eastern area, where the burden of disease and disability is heavy, and access to care is constrained. This study aims to fill this gap by exploring the roles, challenges and support needs of caregivers, care home management, funding and administration in challenged communities in North Eastern Nigeria. The study will also provide a comprehensive understanding of the current situation and identify opportunities for improving the quality of care and support for caregivers and care recipients in these communities. Methods: A mixed-methods design, including both quantitative and qualitative data collection methods, will be used, and it will be guided by the stress process model of caregiving. The qualitative stage approach will comprise a survey, In-depth interviews, observations, and focus group discussion and the quantitative analysis will be used in order to comprehend the variations between caregiver's roles and care home management. A review of relevant documents, such as care home policies and funding reports, would be used to gather quantitative data on the administrative and financial aspects of care. The data collected will be analyzed using both descriptive statistics and thematic analysis. A sample size of around 200-300 participants, including caregivers, care recipients, care home managers and administrators, policymakers and health care providers, would be recruited. Findings: The study revealed that caregivers in challenged communities in North Eastern Nigeria face significant challenges, including lack of training and support, limited access to funding and resources, and high levels of burnout. Care home management and administration were also found to be inadequate, with a lack of clear policies and procedures and limited oversight and accountability. Conclusion: There is a need for increased investment in training and support for caregivers, as well as a need for improved care home management and administration in challenged communities in North Eastern Nigeria. It also highlights the importance of involving community members in decision-making and planning processes related to care homes and services. The study would contribute to the existing body of knowledge by providing a detailed understanding of the challenges faced by caregivers, care home managers and administrators.

Keywords: caregivers, care home management, funding, administration, challenge communities, North Eastern Nigeria

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Authors: Robert H. Bradley, Robert F. Corwyn

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There is abundant research showing that socio-economic status is implicated in parenting. However, additional factors such as family context, parent personality, parenting history and child behavior also help determine how parents enact the role of caregiver. Each of these factors not only helps determine how a parent will act in a given situation, but each can serve to moderate the influence of the other factors. Personality has long been studied as a factor that influences parental behavior, but it has almost never been considered as a moderator of family contextual factors. For this study, relations between three maternal personality characteristics (agreeableness, extraversion, neuroticism) and four aspects of parenting (harshness, sensitivity, stimulation, learning materials) were examined when children were 6 months, 36 months, and 54 months old and again at 5th grade. Relations between these three aspects of personality and the overall home environment were also examined. A key concern was whether maternal personality characteristics moderated relations between household income and the four aspects of parenting and between household income and the overall home environment. The data for this study were taken from the NICHD Study of Early Child Care and Youth Development (NICHD SECCYD). The total sample consisted of 1364 families living in ten different sites in the United States. However, the samples analyzed included only those with complete data on all four parenting outcomes (i.e., sensitivity, harshness, stimulation, and provision of learning materials), income, maternal education and all three measures of personality (i.e., agreeableness, neuroticism, extraversion) at each age examined. Results from hierarchical regression analysis showed that mothers high in agreeableness were more likely to demonstrate sensitivity and stimulation as well as provide more learning materials to their children but were less likely to manifest harshness. Maternal agreeableness also consistently moderated the effects of low income on parental behavior. Mothers high in extraversion were more likely to provide stimulation and learning materials, with extraversion serving as a moderator of low income on both. By contrast, mothers high in neuroticism were less likely to demonstrate positive aspects of parenting and more likely to manifest negative aspects (e.g., harshness). Neuroticism also served to moderate the influence of low income on parenting, especially for stimulation and learning materials. The most consistent effects of parent personality were on the overall home environment, with significant main and interaction effects observed in 11 of the 12 models tested. These findings suggest that it may behoove professional who work with parents living in adverse circumstances to consider parental personality in helping to better target prevention or intervention efforts aimed at supporting parental efforts to act in ways that benefit children.

Keywords: home environment, household income, learning materials, personality, sensitivity, stimulation

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Authors: Peri Ozlem Yuksel-Sokmen, Irfan Cagtay

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Oral languages are destined to disappear rapidly in the absence of interventions aimed at encouraging their usage by young children. The seminal language preservation model proposed by Fishman (1991) stresses the importance of multiple generations using the endangered L1 while engaged in daily routines with younger children. Over the last two decades Fishman (2001) has used his intergenerational transmission model in documenting the revitalization of Basque languages, providing evidence that families are transmitting Euskara as a first language to their children with success. In our study, to motivate usage of Lazuri, we asked caregivers to speak the language while engaged with their toddlers (12 to 48 months) in semi-structured play, and included both parents (N=32) and grandparents (N=30) as play partners. This unnatural prompting to speak only in Lazuri was greeted with reluctance, as 90% of our families indicated that they had stopped using Lazuri with their children. Nevertheless, caregivers followed instructions and produced 67% of their utterances in Lazuri, with another 14% of utterances using a combination of Lazuri and Turkish (Codeswitch). Although children spoke mostly in Turkish (83% of utterances), frequencies of caregiver utterances in Lazuri or Codeswitch predicted the extent to which their children used the minority language in return. This trend suggests that home interventions aimed at encouraging dyads to communicate in a non-preferred, endangered language can effectively increase children’s usage of the language. Alternatively, this result suggests than any use of the minority language on the part of the children will promote its further usage by caregivers. For researchers examining links between play, culture, and child development, structured play has emerged as a critical methodology (e.g., Frost, Wortham, Reifel, 2007, Lilliard et al., 2012; Sutton-Smith, 1986; Gaskins & Miller, 2009), allowing investigation of cultural and individual variation in parenting styles, as well as the role of culture in constraining the affordances of toys. Toy props, as well as picture-books in native languages, can be used as tools in the transmission and preservation of endangered languages by allowing children to explore adult roles through enactment of social routines and conversational patterns modeled by caregivers. Through adult-guided play children not only acquire scripts for culturally significant activities, but also develop skills in expressing themselves in culturally relevant ways that may continue to develop over their lives through community engagement. Further pedagogical tools, such as language games and e-learning, will be discussed in this proposed oral talk.

Keywords: language intervention, pedagogical tools, endangered languages, Lazuri

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Authors: Franco Lorenzo D. Morales

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‘Toshi-no-sakon,’ which translates to as ‘age gap marriage,’ is a term that has been popularized by celebrity couples in the Japanese entertainment industry. Japan is distinct for a developed nation for its rapidly aging population, declining marital and fertility rates, and the reinforcement of traditional gender roles. Statistical data has shown that the average age of marriage in Japan is increasing every year, showing a growing tendency for late marriage. As a result, the government has been trying to curb the declining trends by encouraging marriage and childbirth among the populace. This graduate thesis seeks to analyze the ‘toshi-no-sakon’ phenomenon in lieu of Japan’s current economic and social situation, and to see what the implications are for these kinds of married couples. This research also seeks to expound more on age gaps within married couples, which is a factor rarely-touched upon in Japanese family studies. A literature review was first performed in order to provide a framework to study ‘toshi-no-sakon’ from the perspective of four fields of study—marriage, family, aging, and gender. Numerous anonymous online statements by ‘toshi-no-sakon’ couples were then collected and analyzed, which brought to light a number of concerns. Couples wherein the husband is the older partner were prioritized in order to narrow down the focus of the research, and ‘toshi-no-sakon’ is only considered when the couple’s age gap is ten years or more. Current findings suggest that one of the perceived merits for a woman to marry an older man is that financial security would be guaranteed. However, this has been shown to be untrue as a number of couples express concern regarding their financial situation, which could be attributed to their husband’s socio-economic status. Having an older husband who is approaching the age of retirement presents another dilemma as the wife would be more obliged to provide care for her aging husband. This notion of the wife being a caregiver likely stems from an arrangement once common in Japanese families in which the wife must primarily care for her husband’s elderly parents. Childbearing is another concern as couples would be pressured to have a child right away due to the age of the husband, in addition to limiting the couple’s ideal number of children. This is another problematic aspect as the husband would have to provide income until his child has finished their education, implying that retirement would have to be delayed indefinitely. It is highly recommended that future studies conduct face-to-face interviews with couples and families who fall under the category of ‘toshi-no-sakon’ in order to gain a more in-depth perspective into the phenomenon and to reveal any undiscovered trends. Cases wherein the wife is the older partner in the relationship should also be given focus in future studies involving ‘toshi-no-sakon’.

Keywords: age gap, family structure, gender roles, marriage trends

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Authors: Matthew McArthur, Margaret Friend

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The COVID-19 pandemic disrupted the stability of the home environment for families across the world. Potential disruptions include parent work modality (in-person vs. remote), levels of health anxiety, family routines, and caregiving. These disruptions may have interfered with the processes of early vocabulary acquisition, carrying lasting effects over the life course. Our justification for this research is as follows: First, early, stable, caregiver-child reciprocal interactions, which may have been disrupted during the pandemic, contribute to the development of the brain architecture that supports language, cognitive, and social-emotional development. Second, early vocabulary predicts several cognitive outcomes, such as numeracy, literacy, and executive function. Further, disruption in the home is associated with adverse cognitive, academic, socio-emotional, behavioral, and communication outcomes in young children. We are interested in how disruptions related to the COVID-19 pandemic are associated with vocabulary acquisition in children born during the first two waves of the pandemic. We are conducting a moderated online experiment to assess this question. Participants are 16 children (10F) ranging in age from 19 to 39 months (M=25.27) and their caregivers. All child participants were screened for language background, health history, and history of language disorders, and were typically developing. Parents completed a modified version of the COVID-19 Family Stressor Scale (CoFaSS), a published measure of COVID-19-related family stressors. Thirteen items from the original scale were replaced to better capture change in family organization and stability specifically related to disruptions in income, anxiety, family relations, and childcare. Following completion of the modified CoFaSS, children completed a Web-Based version of the Computerized Comprehension Task and the Receptive One Word Picture Vocabulary if 24 months or older or the MacArthur-Bates Communicative Development Inventory if younger than 24 months. We report our preliminary data as a partial correlation analysis controlling for age. Raw vocabulary scores on the CCT, ROWPVT-4, and MCDI were all negatively associated with pandemic-related disruptions related to anxiety (r12=-.321; r1=-.332; r9=-.509), family relations (r12=-.590*; r1=-.155; r9=-.468), and childcare (r12=-.294; r1=-.468; r9=-.177). Although the small sample size for these preliminary data limits our power to detect significance, this trend is in the predicted direction, suggesting that increased pandemic-related disruption across multiple domains is associated with lower vocabulary scores. We anticipate presenting data on a full sample of 50 monolingual English participants. A sample of 50 participants would provide sufficient statistical power to detect a moderate effect size, adhering to a nominal alpha of 0.05 and ensuring a power level of 0.80.

Keywords: COVID-19, early vocabulary, home environment, language acquisition, multiple measures

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Authors: Pamela Ventola, Laurel Bales, Sara Florczyk

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Background: Fully remote or hybrid administration of clinical outcome measures in rare neurodevelopmental disorders trials is increasing due to the ongoing pandemic and recognition that remote assessments reduce the burden on families. Many assessments in rare neurodevelopmental disorders trials are complex; however, remote/hybrid trials readily allow for the use of centralized raters to administer and score the scales. The use of centralized raters has many benefits, including reducing site burden; however, a specific impact on data quality has not yet been determined. Purpose: The current study has two aims: a) evaluate differences in data quality between administration of a standardized clinical interview completed by centralized raters compared to those completed by site raters and b) evaluate improvement in accuracy of scoring standardized developmental assessments when scored centrally compared to when scored by site raters. Methods: For aim 1, the Vineland-3, a widely used measure of adaptive functioning, was administered by site raters (n= 52) participating in one of four rare disease trials. The measure was also administered as part of two additional trials that utilized central raters (n=7). Each rater completed a comprehensive training program on the assessment. Following completion of the training, each clinician completed a Vineland-3 with a mock caregiver. Administrations were recorded and reviewed by a neuropsychologist for administration and scoring accuracy. Raters were able to certify for the trials after demonstrating an accurate administration of the scale. For site raters, 25% of each rater’s in-study administrations were reviewed by a neuropsychologist for accuracy of administration and scoring. For central raters, the first two administrations and every 10th administration were reviewed. Aim 2 evaluated the added benefit of centralized scoring on the accuracy of scoring of the Bayley-3, a comprehensive developmental assessment widely used in rare neurodevelopmental disorders trials. Bayley-3 administrations across four rare disease trials were centrally scored. For all administrations, the site rater who administered the Bayley-3 scored the scale, and a centralized rater reviewed the video recordings of the administrations and also scored the scales to confirm accuracy. Results: For aim 1, site raters completed 138 Vineland-3 administrations. Of the138 administrations, 53 administrations were reviewed by a neuropsychologist. Four of the administrations had errors that compromised the validity of the assessment. The central raters completed 180 Vineland-3 administrations, 38 administrations were reviewed, and none had significant errors. For aim 2, 68 administrations of the Bayley-3 were reviewed and scored by both a site rater and a centralized rater. Of these administrations, 25 had errors in scoring that were corrected by the central rater. Conclusion: In rare neurodevelopmental disorders trials, sample sizes are often small, so data quality is critical. The use of central raters inherently decreases site burden, but it also decreases rater variance, as illustrated by the small team of central raters (n=7) needed to conduct all of the assessments (n=180) in these trials compared to the number of site raters (n=53) required for even fewer assessments (n=138). In addition, the use of central raters dramatically improves the quality of scoring the assessments.

Keywords: neurodevelopmental disorders, clinical trials, rare disease, central raters, remote trials, decentralized trials

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Authors: Ireen Manase Kabembo, Patrick Chanda

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Background: Substance use disorders are among the chronic conditions that affect all age groups. Worldwide, there is an increase in young people affected by SUDs, which implies that more family members are transitioning into the caregiver role. Family caregivers play a buffering role in the formal healthcare system due to their involvement in caring for persons with acute and chronic conditions in the home setting. Family carers of youth with problematic alcohol and marijuana use experience myriad challenges in managing daily care for this medically vulnerable group. In addition, the poor health-seeking behaviours of youth with SUDs characterized by eluding treatment and runaway tendencies coupled with the effects of the pandemic made caregiving a daunting task for most family caregivers. Issues such as limited and unavailable psychotropic medications, social stigma and discrimination, financial hurdles, systemic barriers in adolescent and young adult mental healthcare services, and the lack of a perceived vulnerability to Covid-19 by youth with SUDs are experiences of family caretakers. Methods: A qualitative study with 30 family caregivers of youth aged 16-24 explored their lived experiences and subjective meanings using two in-depth semi-structured interviews, a caregiving timeline, and participant observation. Findings: Results indicate that most family caregivers had challenges managing care for treatment elusive youth, let alone having them adhere to Covid-19 regulations. However, youth who utilized healthcare services and adhered to treatment regimens had positive outcomes and sustained recovery. The effects of the pandemic, such as job losses and the closure of businesses, further exacerbated the financial challenges experienced by family caregivers, making it difficult to purchase needed medications and daily necessities for the youth. The unabated stigma and discrimination of families of substance-dependent youth in Zambian communities further isolated family caregivers, leaving them with limited support. Conclusion: Since young people with SUDs have a compromised mental capacity due to the cognitive impairments that come with continued substance abuse, they often have difficulties making sound judgements, including the need to utilize SUD recovery services. Also, their tendency to not adhere to the Covid-19 pandemic requirements places them at a higher risk for adverse health outcomes in the (post) pandemic era. This calls for urgent implementation of robust youth mental health services that address prevention and recovery for these emerging adults grappling with substance use disorders. Support for their family caregivers, often overlooked, cannot be overemphasized.

Keywords: chronic care management, Covid-19 pandemic, family caregivers, youth with substance use disorders

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Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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Authors: Mariam Anwaar, Kiran B. Ahmad

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Borderline Personality Disorder (BPD) is an invasive presence of affect instability, disturbance in self-concept and attachment in relationships. The profound indicator is the dichotomous approach of the world in which the ego categorizes individuals, especially their significant others, into secure or threatful beings, leaving little room for a complex combination of characteristics in one person. This defense mechanism of splitting their world has been described through the explanatory model of unconscious conflict theorized by Sigmund Freud’s Electra Complex in the Phallic Stage. The central role is of the father with whom the daughter experiences penis envy, thus identifying with the mother’s characteristics to receive the father’s attention. However, Margret Mahler, an object relation theorist, elucidates the central role of the mother and that the split occurs during the pre-Electra complex stage. Amid the 14 and 24 months of the infant, it acknowledges the world away from the mother as they have developed milestones such as crawling. In such novelty, the infant crawls away from the mother creating a sense of independence (individuation). On the other hand, being distant causes anxiety, making them return to their original object of security (separation). In BPD, the separation-individuation stage is disrupted, due to contradictory actions of the caregiver, which results in splitting the object into negative and positive aspects, repressing the former and adhering to the latter for survival. Thus, with time, the ego distorts the reality into dichotomous categories, using the splitting defenses, and the mental representation of the self is distorted due to the internalization of the negative objects. The explanatory model was recognized in the case study of Fizza, at 21-year-old Pakistani female, residing in Karachi. Her marital status is single with an occupation being a dental student. Fizza lives in a nuclear family but is surrounded by her extended family as they all are in close vicinity. She came with the complaints of depressive symptoms for two-years along with self-harm due to severe family conflicts. Through the intervention of Dialectical Behavior Therapy (DBT), the self-harming actions were reduced, however, this libidinal energy transformed into claustrophobic symptoms and, along with this, Fizza has always experienced vivid dreams. A retrospective method of Jungian dream-analysis was applied to locate the origins of the splitting in the unconscious. The result was the revelation of a sexual harassment trauma at the age of six-years which was displaced in the form of self-harm. In addition to this, the presence of a conflict at the separation-individuation stage was detected during the dream-analysis, and it was the underlying explanation of the claustrophobic symptoms. This qualitative case study implicates the use of a patient’s subjective experiences, such as dreams, to journey through the spiral of the unconscious in order to not only detect repressed memories but to use them in psychotherapy as a means of healing the patient.

Keywords: borderline personality disorder, dream-analysis, Electra complex, separation-individuation, splitting, unconscious

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Authors: Bruno Biagianti, Angela Tseng, Kathy Wannaviroj, Allison Corlett, Megan DuBois, Kyu Lee, Suma Jacob

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Background: ASD is characterized by pervasive Sensory Processing Abnormalities (SPA) and social cognitive deficits that persist throughout the course of the illness and have been linked to functional abnormalities in specific neural systems that underlie the perception, processing, and representation of sensory information. SPA and social cognitive deficits are associated with difficulties in interpersonal relationships, poor development of social skills, reduced social interactions and lower academic performance. Importantly, they can hamper the effects of established evidence-based psychological treatments—including PEERS (Program for the Education and Enrichment of Relationship Skills), a parent/caregiver-assisted, 16-weeks social skills intervention—which nonetheless requires a functional brain capable of assimilating and retaining information and skills. As a matter of fact, some adolescents benefit from PEERS more than others, calling for strategies to increase treatment response rates. Objective: We will present interim data on CICADAS (Care Improving Cognition for ADolescents on the Autism Spectrum)—a clinician-assisted, closed-loop technology mobile application for adolescents with ASD. Via ten mobile assessments, CICADAS captures data on sensory processing abnormalities and associated cognitive deficits. These data populate a machine learning algorithm that tailors the delivery of ten neuroplasticity-based social cognitive training (NB-SCT) exercises targeting sensory processing abnormalities. Methods: In collaboration with the Autism Spectrum and Neurodevelopmental Disorders Clinic at the University of Minnesota, we conducted a fully remote, three-arm, randomized crossover trial with adolescents with ASD to document the acceptability of CICADAS and evaluate its potential as a stand-alone treatment or as a treatment enhancer of PEERS. Twenty-four adolescents with ASD (ages 11-18) have been initially randomized to 16 weeks of PEERS + CICADAS (Arm A) vs. 16 weeks of PEERS + computer games vs. 16 weeks of CICADAS alone (Arm C). After 16 weeks, the full battery of assessments has been remotely administered. Results: We have evaluated the acceptability of CICADAS by examining adherence rates, engagement patterns, and exit survey data. We found that: 1) CICADAS is able to serve as a treatment enhancer for PEERS, inducing greater improvements in sensory processing, cognition, symptom reduction, social skills and behaviors, as well as the quality of life compared to computer games; 2) the concurrent delivery of PEERS and CICADAS induces greater improvements in study outcomes compared to CICADAS only. Conclusion: While preliminary, our results indicate that the individualized assessment and treatment approach designed in CICADAS seems effective in inducing adaptive long-term learning about social-emotional events. CICADAS-induced enhancement of processing and cognition facilitates the application of PEERS skills in the environment of adolescents with ASD, thus improving their real-world functioning.

Keywords: ASD, social skills, cognitive training, mobile app

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Authors: Kuo-Kai Lin, Po-Lun Chang

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Research Background and Purpose: Following the development of the Internet and multimedia, the Internet and information technology have become crucial avenues of modern communication and knowledge acquisition. The advantages of using mobile devices for learning include making learning borderless and accessible. Mobile learning has become a trend in disease management and health promotion in recent years. End-stage renal disease (ESRD) is an irreversible chronic disease, and patients who do not receive kidney transplants can only rely on hemodialysis or peritoneal dialysis to survive. Due to the complexities in caregiving for patients with ESRD that stem from their advanced age and other comorbidities, the patients’ incapacity of self-care leads to an increase in the need to rely on their families or primary caregivers, although whether the primary caregivers adequately understand and implement patient care is a topic of concern. Therefore, this study explored whether primary caregivers’ health care provisions can be improved through the intervention of an automatic speech intelligent system, thereby improving the objective health outcomes of patients undergoing long-term dialysis. Method: This study developed an automatic speech intelligent system with healthcare functions such as health information voice prompt, two-way feedback, real-time push notification, and health information delivery. Convenience sampling was adopted to recruit eligible patients from a hemodialysis center at a regional teaching hospital as research participants. A one-group pretest-posttest design was adopted. Descriptive and inferential statistics were calculated from the demographic information collected from questionnaires answered by patients and primary caregivers, and from a medical record review, a health care scale (recorded six months before and after the implementation of intervention measures), a subjective health assessment, and a report of objective physiological indicators. The changes in health care behaviors, subjective health status, and physiological indicators before and after the intervention of the proposed automatic speech intelligent system were then compared. Conclusion and Discussion: The preliminary automatic speech intelligent system developed in this study was tested with 20 pretest patients at the recruitment location, and their health care capacity scores improved from 59.1 to 72.8; comparisons through a nonparametric test indicated a significant difference (p < .01). The average score for their subjective health assessment rose from 2.8 to 3.3. A survey of their objective physiological indicators discovered that the compliance rate for the blood potassium level was the most significant indicator; its average compliance rate increased from 81% to 94%. The results demonstrated that this automatic speech intelligent system yielded a higher efficacy for chronic disease care than did conventional health education delivered by nurses. Therefore, future efforts will continue to increase the number of recruited patients and to refine the intelligent system. Future improvements to the intelligent system can be expected to enhance its effectiveness even further.

Keywords: automatic speech intelligent system for health care, primary caregiver, long-term hemodialysis, health care capabilities, health outcomes

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Authors: Akane Uda, Ami Tabata, Mi An, Misa Komaki, Ryotaro Ito, Mayumi Inoue, Takehiro Sasai, Yusuke Kusano, Toshihiro Kato

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Early intervention is recommended for children with autism spectrum disorder (ASD), and an increasing number of children have received support and intervention before school age in recent years. In this study, we systematically reviewed preschool interventions focused on repetitive behaviors observed in children with ASD, which are often observed at younger ages. Inclusion criteria were as follows : (1) Child of preschool status (age ≤ 7 years) with a diagnosis of ASD (including autism, Asperger's, and pervasive developmental disorder) or a parent (caregiver) with a preschool child with ASD, (2) Physician-confirmed diagnosis of ASD (autism, Asperger's, and pervasive developmental disorder), (3) Interventional studies for repetitive behaviors, (4) Original articles published within the past 10 years (2012 or later), (5) Written in English and Japanese. Exclusion criteria were as follows: (1) Systematic reviews or meta-analyses, (2) Conference reports or books. We carefully scrutinized databases to remove duplicate references and used a two-step screening process to select papers. The primary screening included close scrutiny of titles and abstracts to exclude articles that did not meet the eligibility criteria. During the secondary screening, we carefully read the complete text to assess eligibility, which was double-checked by six members at the laboratory. Disagreements were resolved through consensus-based discussion. Our search yielded 304 papers, of which nine were included in the study. The level of evidence was as follows: three randomized controlled trials (level 2), four pre-post studies (level 4b), and two case reports (level 5). Seven articles selected for this study described the effectiveness of interventions. Interventions for repetitive behaviors in preschool children with ASD were categorized as five interventions that directly involved the child and four educational programs for caregivers and parents. Studies that directly intervened with children used early intensive intervention based on applied behavior analysis (Early Start Denver Model, Early Intensive Behavioral Intervention, and the Picture Exchange Communication System) and individualized education based on sensory integration. Educational interventions for caregivers included two methods; (a) education regarding combined methods and practices of applied behavior analysis in addition to classification and coping methods for repetitive behaviors, and (b) education regarding evaluation methods and practices based on children’s developmental milestones in play. With regard to the neurophysiological basis of repetitive behaviors, environmental factors are implicated as possible contributors. We assumed that applied behavior analysis was shown to be effective in reducing repetitive behaviors because analysis focused on the interaction between the individual and the environment. Additionally, with regard to educational interventions for caregivers, the intervention was shown to promote behavioral change in children based on the caregivers' understanding of the classification of repetitive behaviors and the children’s developmental milestones in play and adjustment of the person-environment context led to a reduction in repetitive behaviors.

Keywords: autism spectrum disorder, early intervention, repetitive behaviors, systematic review

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Authors: Terryann Clark, Kabir Dasgupta, Sonia Lewycka, Gail Pacheco, Alexander Plum

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This paper focused on two main research aims using data from the Growing Up in New Zealand (GUINZ) birth cohort: 1. To examine ethnic differences in life-course trajectories in the use and experience of healthcare services in early childhood years (namely immunisation, dental checks and use of General Practitioners (GPs)) 2. To quantify the contribution of relevant explanatory factors to ethnic differences. Current policy in New Zealand indicates there should be, in terms of associated direct costs, equitable access by ethnicity for healthcare services. However, empirical evidence points to persistent ethnic gaps in several domains. For example, the data highlighted that Māori have the lowest immunisation rates, across a number of time points in early childhood – despite having a higher antenatal intention to immunise relative to NZ European. Further to that, NZ European are much more likely to have their first-choice lead maternity caregiver (LMC) and use child dental services compared to all ethnicities. Method: This research explored the underlying mechanisms behind ethnic differences in the use and experience of child healthcare services. First, a multivariate regression analysis was used to adjust raw ethnic gaps in child health care utilisation by relevant covariates. This included a range of factors, encompassing mobility, socio-economic status, mother and child characteristics, household characteristics and other social aspects. Second, a decomposition analysis was used to assess the proportion of each ethnic gap that can be explained, as well as the main drivers behind the explained component. The analysis for both econometric approaches was repeated for each data time point available, which included antenatal, 9 months, 2 years and 4 years post-birth. Results: The following findings emerged: There is consistent evidence that Asian and Pacific peoples have a higher likelihood of child immunisation relative to NZ Europeans and Māori. This was evident at all time points except one. Pacific peoples had a lower rate relative to NZ European for receiving all first-year immunisations on time. For a number of potential individual and household predictors of healthcare service utilisation, the association is time-variant across early childhood. For example, socio-economic status appears highly relevant for timely immunisations in a child’s first year, but is then insignificant for the 15 month immunisations and those at age 4. Social factors play a key role. This included discouragement or encouragement regarding child immunisation. When broken down by source, discouragement by family has the largest marginal effect, followed by health professionals; whereas for encouragement, medical professionals have the largest positive influence. Perceived ethnically motivated discrimination by a health professional was significant with respect to both reducing the likelihood of achieving first choice LMC, and also satisfaction levels with child’s GP. Some ethnic gaps were largely unexplained, despite the wealth of factors employed as independent variables in our analysis. This included understanding why Pacific mothers are much less likely to achieve their first choice LMC compared to NZ Europeans; and also the ethnic gaps for both Māori and Pacific peoples relative to NZ Europeans concerning dental service use.

Keywords: child health, cohort analysis, ethnic disparities, primary healthcare

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Authors: Kazuhiro Tateda, Elisa Gonzalez, Shuhei Ito, Kirstin Heinrich, Kevin Sweetland, Pingping Zhang, Catia Ferreira, Michael Pride, Jennifer Moisi, Sharon Gray, Bennett Lee, Fred Angulo

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Clostridium difficile (C. difficile) is the most common cause of antibiotic-associated diarrhea and infectious diarrhea in healthcare settings. Japan has an aging population; the elderly are at increased risk of hospitalization, antibiotic use, and C. difficile infection (CDI). Little is known about the population-based incidence and disease burden of CDI in Japan although limited hospital-based studies have reported a lower incidence than the United States. To understand CDI disease burden in Japan, CLOUD (Clostridium difficile Infection Burden of Disease in Adults in Japan) was developed. CLOUD will derive population-based incidence estimates of the number of CDI cases per 100,000 population per year in Ota-ku (population 723,341), one of the districts in Tokyo, Japan. CLOUD will include approximately 14 of the 28 Ota-ku hospitals including Toho University Hospital, which is a 1,000 bed tertiary care teaching hospital. During the 12-month patient enrollment period, which is scheduled to begin in November 2018, Ota-ku residents > 50 years of age who are hospitalized at a participating hospital with diarrhea ( > 3 unformed stools (Bristol Stool Chart 5-7) in 24 hours) will be actively ascertained, consented, and enrolled by study surveillance staff. A stool specimen will be collected from enrolled patients and tested at a local reference laboratory (LSI Medience, Tokyo) using QUIK CHEK COMPLETE® (Abbott Laboratories). which simultaneously tests specimens for the presence of glutamate dehydrogenase (GDH) and C. difficile toxins A and B. A frozen stool specimen will also be sent to the Pfizer Laboratory (Pearl River, United States) for analysis using a two-step diagnostic testing algorithm that is based on detection of C. difficile strains/spores harboring toxin B gene by PCR followed by detection of free toxins (A and B) using a proprietary cell cytotoxicity neutralization assay (CCNA) developed by Pfizer. Positive specimens will be anaerobically cultured, and C. difficile isolates will be characterized by ribotyping and whole genomic sequencing. CDI patients enrolled in CLOUD will be contacted weekly for 90 days following diarrhea onset to describe clinical outcomes including recurrence, reinfection, and mortality, and patient reported economic, clinical and humanistic outcomes (e.g., health-related quality of life, worsening of comorbidities, and patient and caregiver work absenteeism). Studies will also be undertaken to fully characterize the catchment area to enable population-based estimates. The 12-month active ascertainment of CDI cases among hospitalized Ota-ku residents with diarrhea in CLOUD, and the characterization of the Ota-ku catchment area, including estimation of the proportion of all hospitalizations of Ota-ku residents that occur in the CLOUD-participating hospitals, will yield CDI population-based incidence estimates, which can be stratified by age groups, risk groups, and source (hospital-acquired or community-acquired). These incidence estimates will be extrapolated, following age standardization using national census data, to yield CDI disease burden estimates for Japan. CLOUD also serves as a model for studies in other countries that can use the CLOUD protocol to estimate CDI disease burden.

Keywords: Clostridium difficile, disease burden, epidemiology, study protocol

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Authors: Viktorya Sargsyan, Arax Hovhannesyan, Karine Abelyan

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Introduction: During the last decade, scientific studies have proven the importance of Early Childhood Development (ECD) interventions. These interventions are shown to create strong foundations for children’s intellectual, emotional and physical well-being, as well as the impact they have on learning and economic outcomes for children as they mature into adulthood. Many children in rural Armenia fail to reach their full development potential due to lack of early brain stimulation (playing, singing, reading, etc.) from their parents, and lack of community tools and services to follow-up children’s neurocognitive development. This is exacerbated by high rates of stunting and anemia among children under 3(CU3). This research study tested the effectiveness of an integrated ECD and Maternal, Newborn and Childhood Health (MNCH) model, called “Go Baby, Go!” (GBG), against the traditional (MNCH) strategy which focuses solely on preventive health and nutrition interventions. The hypothesis of this quasi-experimental study was: Children exposed to GBG will have better neurocognitive and nutrition outcomes compared to those receiving only the MNCH intervention. The secondary objective was to assess the effect of GBG on parental child care and nutrition practices. Methodology: The 14 month long study, targeted all 1,300 children aged 0 to 23 months, living in 43 study communities the in Gavar and Vardenis regions (Gegharkunik province, Armenia). Twenty-three intervention communities, 680 children, received GBG, and 20 control communities, 630 children, received MCHN interventions only. Baseline and evaluation data on child development, nutrition status and parental child care and nutrition practices were collected (caregiver interview, direct child assessment). In the intervention sites, in addition to MNCH (maternity schools, supportive supervision for Health Care Providers (HCP), the trained GBG facilitators conducted six interactive group sessions for mothers (key messages, information, group discussions, role playing, video-watching, toys/books preparation, according to GBG curriculum), and two sessions (condensed GBG) for adult family members (husbands, grandmothers). The trained HCPs received quality supervision for ECD counseling and screening. Findings: The GBG model proved to be effective in improving ECD outcomes. Children in the intervention sites had 83% higher odd of total ECD composite score (cognitive, language, motor) compared to children in the control sites (aOR 1.83; 95 percent CI: 1.08-3.09; p=0.025). Caregivers also demonstrated better child care and nutrition practices (minimum dietary diversity in intervention site is 55 percent higher compared to control (aOR=1.55, 95 percent CI 1.10-2.19, p =0.013); support for learning and disciplining practices (aOR=2.22, 95 percent CI 1.19-4.16, p=0.012)). However, there was no evidence of stunting reduction in either study arm. he effect of the integrated model was more prominent in Vardenis, a community which is characterised by high food insecurity and limited knowledge of positive parenting skills. Conclusion: The GBG model is effective and could be applied in target areas with the greatest economic disadvantages and parenting challenges to improve ECD, care practices and developmental outcomes. Longitudinal studies are needed to view the long-term effects of GBG on learning and school readiness.

Keywords: early childhood development, integrated interventions, parental practices, quasi-experimental study

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Authors: Xue Bai, Ranran He, Chang Liu

Abstract:

Care planning before the onset of intensive care needs can benefit older adults’ psychological well-being and increases families’ ability to manage caregiving crises and cope with care transitions. Effective care planning requires collaborative ‘team-work’ in families. However, future care planning has not been substantially examined in intergenerational or family contexts, let alone among immigrant families who have to face particular challenges in parental caregiving. From a family systems perspective, this study intends to explore the extent, processes, and contents of intergenerational care planning of Mainland immigrant ageing families in Hong Kong and to examine the intergenerational congruence and discrepancies in the care planning process. Adopting a qualitative research design, semi-structured in-depth interviews were conducted with 17 adult child-older parent pairs and another 33 adult children. In total, 50 adult children who migrated to Hong Kong after the age of 18 with more than three years’ work experience in Hong Kong had at least one parent aged over 55 years old who was not a Hong Kong resident and considered his/herself as the primary caregiver of the parent were recruited. Seventeen ageing parents of the recruited adult children were invited for dyadic interviews. Scarcity of caregiving resources in the context of cross-border migration, intergenerational discrepancies in care planning stages, both generations’ struggle and ambivalence toward filial care, intergenerational transmission of care values, and facilitating role of accumulated family capital in care preparation were primary themes concluded from participants’ narratives. Compared with ageing parents, immigrant adult children generally displayed lower levels of care planning. Although with a strong awareness of parents’ future care needs, few adult children were found engaged in concrete planning activities. This is largely due to their uncertainties toward future life and career, huge work and living pressure, the relatively good health status of their parents, and restrictions of public welfare policies in the receiving society. By contrast, children’s cross-border migration encouraged ageing parents to have early and clear preparation for future care. Ageing parents mostly expressed low filial care expectations when realizing the scarcity of family caregiving resources in the cross-border context. Even though they prefer in-person support from children, most of them prepare themselves for independent ageing to prioritize the next generation’s needs or choose to utilize paid services, welfare systems, friend networks, or extended family networks in their sending society. Adult children were frequently found caught in the dilemma of desiring to provide high quality and in-person support for their parents but lacking sufficient resources. Notably, a salient pattern of intergenerational transmission in terms of family and care values and ideal care arrangement emerged from intergenerational care preparation. Moreover, the positive role of accumulated family capital generated by a reunion in care preparation and joint decision-making were also identified. The findings of the current study will enhance professionals’ and service providers’ awareness of intergenerational care planning in cross-border migration contexts, inform services to alleviate unpreparedness for elderly care and intergenerational discrepancies concerning care arrangements and broaden family services to encompass intergenerational care planning interventions. Acknowledgment: This study is supported by a General Research Grant from the Research Grants Council of the HKSAR, China (Project Number: 15603818).

Keywords: intergenerational care planning, mainland immigrants in Hong Kong, migrant family, older adults

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