System For Families Research Articles

How is the specialist-primary palliative care model functioning for cancer patients in the current New Zealand health system?

Patient barriers to accessing hospice and palliative care (PC) have been well studied. Important, yet less investigated, is how cancer patients whose hospice referrals were not accepted are being cared for. This article aims to understand the referral process from PC providers' perspectives and the implications of the current palliative system for patients, families and health professionals. We conducted interviews with 28 healthcare professionals via Zoom. Participants worked in specialist and primary PC settings, such as hospices and aged residential care, and were based in seven Aotearoa New Zealand regions. We thematically analysed the interview transcripts. We identified four themes: the state of the PC system; communication issues; unmet needs and inequities; and managing care within the current system. The limited funding for PC and other health services is resulting in a decrease in PC services. The specialist-primary model of end-of-life supportive care in New Zealand is undermined by under-funding. The implications for cancer patients, their families/whānau and their healthcare professionals are moves towards a more biomedical model of PC, a reduction in training and unsustainable workarounds to manage care within the under-resourced system. Considering the ageing population, urgent action is needed.

‘Counselling is the only thing to do’: healthcare providers’ experience of Kangaroo Mother Care in Bangladesh – a qualitative study

AimTo explore healthcare providers’ (HCPs) experiences of facility-initiated kangaroo mother care (KMC) in Bangladesh.MethodsAn explorative qualitative study based on 11 semistructured interviews with HCPs from 2 hospitals in Dhaka was...

Examining the Relation Between Telehealth Experiences in Early Intervention and Rurality Among Families of Young Children With Developmental Disabilities

The Individuals with Disabilities Education Act (IDEA, 2004) governs the Early Intervention (EI) system for families of children aged zero to three with developmental delays and disabilities. As a result of the COVID-19 pandemic, many states offer telehealth as a way for families to receive their EI services. Given the limited EI providers in rural areas, it seems that telehealth may especially help rural families to access EI services. However, little research has been done in relation to family use and satisfaction with telehealth in relation to rurality. To this end, we conducted a statewide survey of 256 families of children in EI about their use of EI services via telehealth. There was a negative correlation between family satisfaction with telehealth and rurality, with rural families being more dissatisfied with telehealth. Implications for practice and research are discussed.

Policing of youth in the hospital

BackgroundEach year millions of children seek care in emergency departments, many of whom are from marginalized and minoritized groups who lack access to primary and preventive care. Law enforcement personnel are also commonly present in pediatric and adult emergency departments serving in a range of roles. Therefore, pediatric emergency departments sit at the nexus of the health system and the legal system for many vulnerable youth and families. ObjectiveHerein, we explore several common specific legal issues surrounding policing of youth in the hospital setting: patient privacy and disclosure of information, questioning and visitation restriction, autonomy and decision making, restraints and use of force, and patient property. MethodsOur team of legal scholars and clinician researchers examined the literature on policing of youth in healthcare settings and patients' legal rights in healthcare settings through searches using PubMed, Westlaw, and Lexis. FindingsThrough rigorous analysis of the medical literature, legal scholarship, and relevant case law, several important themes were identified which present challenges to clinicians caring for vulnerable children. Conclusions and relevancePediatric clinicians, highly trained professionals in the medical and social care of youth and children, are often unaware of legal rules and procedures that guide law enforcement interaction with youth. This lack of knowledge may result in unknowing and unwitting violations of patients' rights while also compromising the quality of health care provided. Therefore, it is imperative that clinicians are educated on their roles and their institutions' roles in safeguarding patients' privacy and autonomy while still promoting effective collaboration with law enforcement.

Co-designing discharge communication interventions for mental health visits to the pediatric emergency department: a mixed-methods study

BackgroundDischarge communication is essential to convey information regarding the care provided and follow-up plans after a visit to a hospital emergency department (ED), but it can be lacking for visits for pediatric mental health crises. Our objective was to co-design and conduct usability testing of new discharge communication interventions to improve pediatric mental health discharge communication.MethodsThe study was conducted in two phases using experience-based co-design (EBCD). In phase 1 (Sep 2021 to Jan 2022), five meetings were conducted with a team of six parents and two clinicians to co-design new ED discharge communication interventions for pediatric mental health care. Thematic analysis was used to identify patterns in team discussions and participant feedback related to discharge communication improvement and the Capability, Opportunity, Motivation, Behavior (COM-B) model was used to identify strategies to support the delivery of the new interventions. After meeting five, team members completed the Public and Patient Engagement Evaluation Tool (PPEET) to evaluate the co-design experience. In phase 2 (Apr to Jul 2022), intervention usability and satisfaction were evaluated by a new group of parents, youth aged 16–24 years, ED physicians, and nurses (n = 2 of each). Thematic analysis was used to identify usability issues and a validated 5-point Likert survey was used to evaluate user satisfaction. Evaluation results were used by the co-design team to finalize the interventions and delivery strategies.ResultsTwo discharge communication interventions were created: a brochure for families and clinicians to use during the ED visit, and a text-messaging system for families after the visit. There was high satisfaction with engagement in phase 1 (overall mean PPEET score, 4.5/5). In phase 2, user satisfaction was high (mean clinician score, 4.4/5; mean caregiver/youth score, 4.1/5) with both interventions. Usability feedback included in the final intervention versions included instructions on intervention use and ensuring the text-messaging system activates within 12–24 h of discharge.ConclusionsThe interventions produced by this co-design initiative have the potential to address gaps in current discharge practices. Future testing is required to evaluate the impact on patients, caregivers, and health care system use after the ED visit.

Is there a relationship between abuse of alcohol and illicit drugs seen in hair results?

Combined use of alcohol and illicit drugs is a serious health and social problem. In this study, it was examined, whether a relationship between alcohol and drug abuse can be ascertained by comparison of alcohol marker and drug concentrations in hair. In the frame of a social support system for families with parental abuse of illicit drugs, hair samples were analyzed between 2011 and 2022 for methadone, heroin (6-acetylmorphine), cocaine, amphetamine, ecstasy (MDMA), cannabinoids (THC), and the alcohol markers ethyl glucuronide (EtG) and ethyl palmitate (EtPa). For 1314 hair samples from adolescent and adult family members, the hair results show a prevalence of combined occasional or regular drug use and social or abusive alcohol use of 41%-60% except heroin (35%). The drug concentrations were statistically compared in the three categories of abstinence or moderate drinking, social drinking, and alcohol abuse. For the most frequently detected drug cocaine (n = 703), a significant increase of the concentrations with rising alcohol consumption was found. The frequent detection of cocaethylene proved the preferred simultaneous intake of both substances. For THC (n = 489), no significant difference between the alcohol consumer groups was seen. Concerning the less frequently detected methadone (n = 89), 6-acetylmorphine (n = 92), amphetamine (n = 123), and MDMA (n = 105), no clear trend between drug and alcohol marker results was determined. It is concluded that the evaluation of hair results is an appropriate way to study the extent of combined drug-alcohol consumption and complements other studies based on acquisition of consumption data by interview or questionnaire.

A Chatbot System for Supporting Women and Families during Pregnancy

PregBot is an innovative system that harnesses the power of machine learning (ML) and natural language processing (NLP) to provide comprehensive support to women and families throughout the pregnancy journey. Recognizing the varying needs and challenges faced by expectant mothers, PregBot aims to revolutionize the maternal healthcare experience by offering personalized guidance, real-time query resolution, and a virtual community for support and connection. The system leverages ML algorithms to analyze user data and tailor responses, while NLP techniques enable natural language interactions, allowing users to communicate with PregBot in a conversational manner. By continuously learning from user interactions, PregBot adapts and evolves, ensuring the delivery of timely and relevant information based on the user's unique circumstances and stage of pregnancy. With its innovative approach to maternal healthcare, PregBot represents a significant step towards empowering women, promoting positive pregnancy experiences, and contributing to the overall well-being of expectant mothers and their families.

Does employment assistance promote employment of the impoverished in China? Evidence from a mixed methods approach

AbstractThe issue of employment is extremely significant, and employment assistance programs work for special social assistance and employment support for the impoverished in China. Are employment assistance programs, particularly those providing job recommendations and free vocational training, effective in promoting employment in China? This study answers this question using a mixed methods approach. Logistic regressions and propensity score matching–difference in differences models using unique data from the “Construction of Social Policy Support System for Urban and Rural Impoverished Families in China” project demonstrates that providing either job recommendations or free vocational training does not significantly promote employment. Qualitative analyses of in‐depth interviews show that the ineffectiveness of providing job recommendations and vocational training programs can be attributed to three reasons: (1) lack of coordination among employment assistance providers, (2) mismatch between employment assistance provision and recipients' needs, and (3) employment assistance as subordinates to Dibao and labor market policy. This study has important theoretical and practical implications for research on and improvement of employment assistance.

In Solidarity: Development, Implementation, and Evaluation of a Family Engagement and Home Learning Program During the COVID-19 Pandemic

The COVID-19 pandemic caused serious social disruptions and posed significant challenges to all families, especially immigrant families. Immigrant families who spoke languages other than English and who had young bilingual children faced numerous barriers as they struggled to navigate remote learning with their children without adequate language and technological support. The need to design action plans to mitigate the negative educational impact of the pandemic on immigrant families with young bilingual children was urgent. To address the immediate needs of immigrant families during the first year of the pandemic, this transformative mixed-methods study presents a family engagement and home learning program called the Home Connection. This program was collaboratively designed and implemented to support 20 immigrant families with 42 young bilingual children from the Metro and Greater Boston Areas. Focusing on the development, implementation, and evaluation of the Home Connection program, findings from this study demonstrate how the family participants actively engaged with and positively evaluated the program. These findings also suggest that family and community engagement play a crucial role in creating a more sustainable support system for immigrant families as well as equitable learning experiences for young bilingual children during and after the pandemic.

Evaluating the efficiency of medical care for children with diabetes mellitus in different regions of Ukraine over the past 20 years (2002–2021) of peacetime

Background. The growing number of children with diabetes creates a global economic problem, including a financial burden on the country’s health care system and economic stress for families of children with diabetes. The purpose was to assess the effectiveness of medical care for children with diabetes in different regions of Ukraine over the last 20 years (2002–2021) of peacetime. Material and methods. The article presents the results of statistical evaluation and epidemiological analysis of data from the Center for Medical Statistics of the Ministry of Health of Ukraine on the rates of disability, hospitalization, and inpatient care among the pediatric population in 2002–2021. Statistical processing of the results was carried out using MS Excel, XLSTAT-Pro. Results. During 2002–2021, an increase in the rate of primary disability due to diabetes mellitus was highest among adolescents — by 4.1 times and lowest among primary schoolchildren — by 3.4 times; among children 0–6 years old, it increased by 3.6 times. The proportion of children with disabilities due to diabetes as of 2017 is 12 % among the age group of 0–6 years, and 25 % in adolescents (15–17 years). In 2013–2021, the hospitalization rate among children with diabetes increased from 1.27 to 1.35 per 1,000 of the relevant population, and the average length of hospital stay decreased by 19 %. The rate of mortality due to diabetes complications among hospitalized children varies and does not have a specific trend (in 2021, it was 0.02 per 100 in-patients). Conclusions. The analysis of the efficiency of medical care for children with diabetes during 2002–2021 in the context of increasing prevalence and incidence of diabetes showed stable trends towards a huge increase in the level of primary and general disability, a slight increase in hospitalization rates, and a decrease in the average length of hospital stay. These results call for a detailed study of the causes, control, and revision of protocol documents for the management of such patients.

25 The Hybrid Learning Environment During Covid-19: A Case Study on IEP Implementation for a Student with Autism Spectrum Disorder

Objective:An effective support system for families with children with an Autism Spectrum Disorder (ASD) consists of multiple methods of educational and therapeutic delivery. Such methods are adapted to meet a family’s needs and needs of the time, like the COVID-19 pandemic. Individualized Educational Plan (IEP) are established by schools to support success in academics for children with ASD. IEPs can vary depending on the district and accessibility, thus, the effective implementation and communication between this support system is important for its success. The current case study examines academic and therapeutic outcomes of an IEP implementation during hybrid learning of a child with ASD and their family.Participants and Methods:Purposeful sampling identified a participant from a previous IRB approved study through the UNLV Educational Psychology program that interviewed parents on their remote learning experience. A qualitative case study was applied to further investigate student outcomes. Parent interview and the child’s progress report were coded and analyzed systematically. The identified family included correspondence from the mother (Lisa, 37) and her son (Noah, 9). Noah attended third grade at a Charter School and was diagnosed with ASD in 2019. His IEP included 80% in General Education (online) with Special Education assistance (in person; reading, writing, and mathematics) and Occupational (OT), Speech/Language (SLP), and Physical Therapy (PT) (hybrid).Results:Noah began hybrid learning in October 2020, with in-person learning two days a week and remote learning everyday for two to three hours each day. Progress report and interview were collected in April 2021 at the halfway point of his IEP implementation which described Noah’s current special education and therapy services goals/outcomes in March 2021. This included 11 goals that were observed and assessed in OT (2), PT(2), Reading (2), Writing (1), Math (2), and SLP (2). Noah progressed in 9 of 11 goals, with 1 being met and 8 classified as satisfactory by displaying some improvement in respective skills mid year. The remaining OT (2) goals showed no definitive conclusion. Lisa mentioned that lack of direct observation of particular skills and too many online classes to attend led to inconclusive outcomes. Lisa and Noah came across difficulties while engaging in OT online sessions encountering emotional stress when adjusting to the mode of delivery. Lisa expressed positive emotions when referring to the support system and described it as collaborative with adequate attention to multiple aspects of his development. She voiced understanding of her’s and other professionals’ role and the extent of their abilities in the context of the pandemic.Conclusions:Of the 11 IEP goals, there was adequate progress for the child amid hybrid learning. The parent preferred that OT be delivered in person as certain procedures require direct contact and affected outcomes. Hybrid learning has allowed for parents to directly access their children’s endeavors and heighten communication with professionals. This suggests that maintenance of IEP standards can be satisfactory in a hybrid learning model with adequate monitoring from parents and treatment teams for children with ASD.

The current state and trends in the development of social security for families with children in the Russian Federation

The article discusses the current state of the social security system for families with children and analyzes the new areas of social support for this category of the population regarded as the most vulnerable. These measures were adopted during the COVID-19 pandemic and the special military operation in Ukraine and reflect new trends in social security system development, focused on the increase of social protection of the specified category.

고령자 돌봄 주거복합단지(CCRC, Continuing Care Retirement Community) 조성을 위한 법적 과제

Providing an appropriate residential environment for the elderly, who spend most of their time in their residence, is one of the most important tasks facing the aging society. In particular, the elderly’s physical function may deteriorate quickly, which makes it necessary to provide a residential environment that can cover everything from being able to live independently to being in need of medical care. In Korea, various housing policies for the elderly have been promoted based on the Elderly Welfare Act; however, pre-sale elderly welfare housing no longer exists due to disruptive operation, and silver town has become a place where only the wealthy can enter. In addition, nursing homes are considered as unwelcome facilities for the elderly which isolate them from society. Accordingly, some local governments in Korea have recently been actively promoting the introduction of the Continuing Care Retirement Community(CCRC), which has developed in the US at the level of “aging in place.” In this study, domestic implications were examined by referring to US, where CCRC first began, and Japan, which has recently actively promoted CCRC in order to revitalize the region. Although CCRC in US was established naturally in the market, Korean state authorities have actively intervened through the legal system to stabilize the elderly’s residence by considering that one contracting party is an elderly. In US, most of the CCRCs are operated by the private sector, as it is characterized by the establishment of a legal system not only to protect consumers but also to stabilize its management. In Japan, it is notable that the CCRC’s initiative itself is being carried out to overcome low birth rates and aging societies and to revitalize local areas to overcome problems caused by the concentration of population in the metropolitan area. Therefore, Japan’s legal system focuses not on management stability, but on the contents of the service and the eligibility of housing of the elderly. However, there is a fundamental difference from Korea’s elderly-related law system for low-income families, for it has legal system that oversees the residential environment of the elderly separably from the Elderly Welfare Act.

The first linkage map for Australo-Papuan Treefrogs (family: Pelodryadidae) reveals the sex-determination system of the Green-eyed Treefrog (Litoria serrata)

Amphibians represent a useful taxon to study the evolution of sex determination because of their highly variable sex-determination systems. However, the sex-determination system for many amphibian families remains unknown, in part because of a lack of genomic resources. Here, using an F1 family of Green-eyed Treefrogs (Litoria serrata), we produce the first genetic linkage map for any Australo-Papuan Treefrogs (family: Pelodryadidae). The resulting linkage map contains 8662 SNPs across 13 linkage groups. Using an independent set of sexed adults, we identify a small region in linkage group 6 matching an XY sex-determination system. These results suggest Litoria serrata possesses a male heterogametic system, with a candidate sex-determination locus on linkage group 6. Furthermore, this linkage map represents the first genomic resource for Australo-Papuan Treefrogs, an ecologically diverse family of over 220 species.

Многофункциональное образовательное пространство «Поляна активности» как элемент комплексной групповой работы с детьми с расстройствами аутистического спектра

<p style="text-align: justify;"><strong>Objectives. </strong>The use and considering of natural environment in the educational work with children with autism spectrum disorders (ASD) can provide a solution to such developmental tasks as physical and social development, social interactions with children and adults, increasing the comfort of the educational environment. The purpose of presented work is to analyze the results of the application of complex psycho-educational work in the setting of the multifunctional educational area “Glade of Activity”.</p> <p style="text-align: justify;"><strong>Methods. </strong>Comprehensive psycho-educational work in the setting of the “Glade of Activity” was carried out in the kindergarten No. 133 in the city of Tyumen. 53 children with ASD took part in the project in the period of 2019— 2023. 74% of children had an intellectual delay, 10% had different intellectual disabilities. Following methods were used: Individual psycho-educational examination for children with autism spectrum disorders (PEP-3), observation method, questionnaires for parents.</p> <p style="text-align: justify;"><strong>Results</strong>. 92% of subjects had slight positive developmental trend and in 8% of the subjects registered more pro­nounced positive trend in the development of mental functions, socially acceptable forms of behavior, as well as in the physical development. According to the results of observations and questioning of parents, it is noted that children have become interested in objects of joint activity with teachers and other children. Anxiety outside the group has decreased, independence in choosing the type of activity has increased, involvement in joint activities. There is a de­crease in the number and strength of the manifestation of negative reactions.</p> <p style="text-align: justify;"><strong>Conclusions</strong>. It is planned to include “Glade of Activity” in the comprehensive support system for families raising children of early preschool age with disabilities and different diagnosis. In order to conduct further research, it is planned to develop a system for evaluating the effectiveness of psycho-educational technologies and methods.</p>

Striving for a safe ground-A lifeworld approach of family members' experiences of the critical illness trajectory.

To explore the experiences of family members after they have lived through a close one's illness trajectory starting with critical illness and intensive care treatment, throughout hospitalisation and after their return home, and describe what was important and challenging for them during this time. Being family during and after critical illness and intensive care treatment may be traumatic and challenging. An in-depth understanding of family members' lifeworld throughout a close one's illness trajectory is needed. A qualitative design with a phenomenological approach. We held ten interviews with eleven next of kin, nine of which were individual and one with a parent couple. The interviews lasted 90 minutes, on average, and were transcribed verbatim. Giorgi's phenomenological method guided the analysis. The overall structure was 'striving for a safe ground for themselves and their close one', which was dependent on the three constituents of 'in need of care', 'to take on responsibility' and 'to create new understanding'. Throughout the illness trajectory, the family members required care to increase their feelings of safety in the context of their close one being unsafe. They described taking on responsibility for their close one-a responsibility that increased after hospital discharge-as demanding new knowledge which they were often unable to obtain. Families of critically ill patients need to be seen on their own behalf. Moreover, when taking on responsibility for their close one, they regularly need more knowledge than they get. There seems to be an absence of a support system for families with caring responsibilities after their relatives are discharged from hospitals. This study shows the importance of family carers being considered in their own right, as well as their individual needs throughout a close one's illness trajectory. There seems to be a gap in the knowledge of what family members require when their close one is discharged. Indeed, a better support system is essential for families following a hospital discharge.

Unrelated hematopoietic stem cell transplantation for familial platelet disorder/acute myeloid leukemia with germline RUNX1 mutations.

Germline mutations in RUNX1 result in rare autosomal-dominant familial platelet disorder with predisposition to acute myeloid leukemia (FPD/AML). As genetic analysis is becoming increasingly prevalent, the diagnosis rate of FPD/AML is expected to increase. In this report, we present two pedigrees, one diagnosed molecularly and another highly suspected to be FPD/AML, whose members both received allogeneic hematopoietic stem cell transplantation (HSCT). Both pedigrees had a family history of thrombocytopenia, platelet dysfunction, and hematological malignancies. One family inherited a frameshift mutation (p.P240fs) of RUNX1, a known pathogenic variant. Another family inherited a point mutation (p.G168R) in the runt-homology domain, the clinical significance of which is uncertain at this point. As this mutation was completely absent from all population databases and had a relatively high REVEL score of 0.947, we thought that it would be dangerous to ignore its possible pathogenicity. Consequently, we avoided choosing HSCT donors from relatives of both families and performed HSCT from unrelated donors. In conclusion, our experience with two families of FPD/AML highlights the importance of searching for gene mutations associated with germline predisposition and indicates the necessity of developing a donor coordination system for FPD/AML patients, as well as a support system for families.

Contribution of parental health to the subsequent social assistance entry of the family with children: a nationwide register-linked birth cohort study in Finland

AimOur aim in this paper was to estimate the contribution of different parental specialised health care diagnoses to the subsequent risk of entry into the social assistance system for families...

Analysis of Family Health with a Combination of Naive Bayes KNN Methods

Health is a very important part in the life of our nation and country, in a developed and developing nation there is a healthy society. Healthy can be defined as the state of an individual who is prosperous both physically, economically and socially. Health is what needs to be maintained and cared for for the survival of a nation and state. Seeing the importance of the health element in a nation, the government has implemented the Nawacita program with one of the points referring to family health. In implementing the healthy family program, the government has sought to collect data and control healthy families with a family approach. Looking at the data collection system for healthy families with status determination, that is, averaging the indicator values to get the family's health status. The researcher intends to develop in terms of determining family health status by using a combination method of the K-Nearest Neighbor (KNN) method with Naïve Bayes with the aim of knowing the results of applying the method and obtaining better results. Based on the results of the research conducted, the accuracy value of 93.53% was obtained in the combination model of the Naïve Bayes KNN method. So it can be concluded that the combination of these methods is good for determining family health status.

Investigating and Developing a Practical Domestic-Medication System of Public Health for Chinese Family.

(1) Background: The main research aim of this paper is to investigate the commonly stocked medicines in Chinese households. Firstly, a large number of questionnaires were collected to uncover the problem: most Chinese families have the habit of stocking their family medicine boxes. However, there is a lack of a standardized, systematic, and scientific list of household medicine stockpiles. As a result, there are major problems in stocking medicines in households: (1) There is little connection between the type and quantity of medicines stocked and real life; (2) The expiration date of medicines leads to misuse and waste of medicines; (3) The existing list of medicines can provide little help. (2) Methods: The preliminary drug stock list was summarized through case studies; the authenticity of the questions and the credibility of the list were verified through interviews; the number of different types of drugs and the relationship between the resident's perception of the importance of drugs and their frequency of use was determined through questionnaires; the authenticity of the list was verified through interviews with senior doctors. (3) Results: We finally composed a scientific and practical list of common household medicines, developed a practical domestic-medication system for Chinese families, and conducted validation studies, which received the approval of senior doctors. (4) Conclusions: (1) Chinese families need to prepare medicines according to the actual composition of the family; (2) Chinese families need a scientific and systematic list of commonly prepared medicines; and (3) in addition to the types of medicines, it is also necessary to consider the number of individual types of medicines to be stocked.