Search results for: whaanau (family)

Authors: Monica Dantas

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At what socio-economic costs can the food industry offer products at low prices? This research seeks to understand and to explore how we attribute competence and meaning, what enables the outcomes of agriculture and what institutions provides validation regarding food production. This study objective is to explain and interpret conditions of the present state of agriculture in Brazil centring on two distinct segments, agribusiness and family farming, as the Brazilian, rapidly changing political environment unfolds. The approach is grounded in multidisciplinary literature drawing from the politics of development, the sociology of food, the sustainability framework and the conceptual differences between agribusiness and family farming regarding the innate purpose of the two segments. In addition, a quantitative portion of the research includes secondary data analysis from statistical measurements, economic indicators, federal budget information, and census data to compare the two segments, conveying a general snapshot of the conditions investigated. The results raised questions about the perceived image of the success of agribusiness, against some contradicting economic checks and balances. Analyzing how public funds are invested in agriculture shed light on what can enable or undermine the development of food systems in Brazil. It also revealed how politics, ideology, and corporations might influence the Brazilian Federal. In the 2000-2018 observed timeline of annual federal spending on agriculture in Brazil, there is variation in the amount invested in family farming that seems to 'coincide' with the ideological direction of the federal government in power. It was also observed that significant changes in the institutional framework and financial support either promoted or purposely undermined family farming importance using public institutions to validate support for agribusiness.

Keywords: food politics, sustainability, family farming, food system, public budget

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Authors: Reham Khalaf-Nazzal, Imad Dweikat, Paula Gimenez, Iker Oyenarte, Alfonso Martinez-Cruz, Domonik Muller

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Metal cation transport mediator (CNNM) gene family comprises 4 isoforms that are expressed in various human tissues. Structurally, CNNMs are complex proteins that contain an extracellular N-terminal domain preceding a DUF21 transmembrane domain, a ‘Bateman module’ and a C-terminal cNMP-binding domain. Mutations in CNNM2 cause familial dominant hypomagnesaemia. Growing evidence highlights the role of CNNM2 in neurodevelopment. Mutations in CNNM2 have been implicated in epilepsy, intellectual disability, schizophrenia, and others. In the present study, we aim to elucidate the function of CNNM2 in the developing brain. Thus, we present the genetic origin of symptoms in two family cohorts. In the first family, three siblings of a consanguineous Palestinian family in which parents are first cousins, and consanguinity ran over several generations, presented a varying degree of intellectual disability, cone-rod dystrophy, and autism spectrum disorder. Exome sequencing and segregation analysis revealed the presence of homozygous pathogenic mutation in the CNNM2 gene, the parents were heterozygous for that gene mutation. Magnesium blood levels were normal in the three children and their parents in several measurements. They had no symptoms of hypomagnesemia. The CNNM2 mutation in this family was found to locate in the CBS1 domain of the CNNM2 protein. The crystal structure of the mutated CNNM2 protein was not significantly different from the wild-type protein, and the binding of AMP or MgATP was not dramatically affected. This suggests that the CBS1 domain could be involved in pure neurodevelopmental functions independent of its magnesium-handling role, and this mutation could have affected a protein partner binding or other functions in this protein. In the second family, another autosomal dominant CNNM2 mutation was found to run in a large family with multiple individuals over three generations. All affected family members had hypomagnesemia and hypermagnesuria. Oral supplementation of magnesium did not increase the levels of magnesium in serum significantly. Some affected members of this family have defects in fine motor skills such as dyslexia and dyslalia. The detected mutation is located in the N-terminal part, which contains a signal peptide thought to be involved in the sorting and routing of the protein. In this project, we describe heterogenous clinical phenotypes related to CNNM2 mutations and protein functions. In the first family, and up to the authors’ knowledge, we report for the first time the involvement of CNNM2 in retinal photoreceptor development and function. In addition, we report the presence of a neurophenotype independent of magnesium status related to the CNNM2 protein mutation. Taking into account the different modes of inheritance and the different positions of the mutations within CNNM2 and its different structural and functional domains, it is likely that CNNM2 might be involved in a wide spectrum of neuropsychiatric comorbidities with considerable varying phenotypes.

Keywords: magnesium transport, autosomal recessive, autism, neurodevelopment, CBS domain

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Authors: Seyyed Kavous Abbasi

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Technical and professional branch is a subcategory of high school educational system. It deals with the programs which have been designed for the promotion of applied science and necessary skill and growth of potential talents in students. The purpose of performance of this branch is preparing of preponderance of in police in different section of industries and service. The aim of this research is the survey of group relation family, economic, educational and individual factors and the student's tendency toward technical professional courses. The method of the study is descriptive survey. 195 subjects were chosen randomly from all the male and female students of technical and professional school in Izeh. Instrument for this research was research-made questionnaire consisting of 22 questions on the base of likers spectrum. The reliability of this questionnaire has been estimated 0.8. Analyses of research data has been performed in two levels of descriptive and inferential statistics. Analyses of data has shown that the family factors with average of 3.12, individual factors 3.95, economic factors 3.92 and educational factors 3.57 more than middle level have more effects , in comparison with the factor of group relation with average of 2.79 less than average level in tendency the technical and professional course . Comparison of effective factors in tendency to technical and professional course has shown that individual factors had the most effects and the group relation factors had the least effects. Comparison between male and female subject's ideas showed that there is a different between their ideas about economics and family factors.

Keywords: high school, relation family, individual factors, analysis interest

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Authors: Hend Almaseb

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Gottman proposed a model of marital conflict with three phases: Agenda-Building, Arguing, and Negotiation. Among a sample of 520 married Kuwaiti women, this study examined the relationship between these phases and the following demographic variables: Level of education, Family income, Health, Occupation, and Tribal affiliation. In addition, the study 1) investigated the marital conflict phases the participants reported having experienced or are currently experiencing and 2) identified the variables that predict one of these conflict phases. The results showed a significant relationship between the following: 1) the Agenda-Building phase and Health; 2) the Arguing phase and Family income, Occupation, and Tribal Affiliation; and 3) the Negotiation phase and Level of education. In addition, a linear regression shows a substantial correlation between the two predictor variables (Level of education and Health problems) and the Agenda Building and Negotiation phases and 5) another substantial correlation between Family income and Arguing.

Keywords: clinical social work, Kuwait, marital conflict, women

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Authors: Longqing Li

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The paper addresses the inefficiency of the classical model in measuring the Value-at-Risk (VaR) using a normal distribution or a Student’s t distribution. Specifically, the paper focuses on the one day ahead Value-at-Risk (VaR) of major stock market’s daily returns in US, UK, China and Hong Kong in the most recent ten years under 95% confidence level. To improve the predictable power and search for the best performing model, the paper proposes using two leading alternatives, Extreme Value Theory (EVT) and a family of GARCH models, and compares the relative performance. The main contribution could be summarized in two aspects. First, the paper extends the GARCH family model by incorporating EGARCH and TGARCH to shed light on the difference between each in estimating one day ahead Value-at-Risk (VaR). Second, to account for the non-normality in the distribution of financial markets, the paper applies Generalized Error Distribution (GED), instead of the normal distribution, to govern the innovation term. A dynamic back-testing procedure is employed to assess the performance of each model, a family of GARCH and the conditional EVT. The conclusion is that Exponential GARCH yields the best estimate in out-of-sample one day ahead Value-at-Risk (VaR) forecasting. Moreover, the discrepancy of performance between the GARCH and the conditional EVT is indistinguishable.

Keywords: Value-at-Risk, Extreme Value Theory, conditional EVT, backtesting

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Authors: Godswill Nwabuisi Osuafor, Sonto Maria Maputle

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Background: Abounding studies found that religiosity and social factors modulate alcohol use among university students. However, there is a scarcity of empirical studies examining the protective effects of religiosity and other social factors on alcohol use and abuse in South African universities. The aim of this study was therefore to assess the protective effects of religiosity and roles of social factors on alcohol use among university students. Methodology: A survey on the use of alcohol among 416 university students was conducted using structured questionnaire in 2014. Data were sourced on religiosity and contextual variables. Students were classified as practicing intrinsic religiosity or extrinsic religiosity based on the response to the measures of religiosity. Descriptive, chi square and binary logistic analyses were used in processing the data. Result: Results revealed that alcohol use was associated with religiosity, religion, sex, family history of alcohol use and experimenting with alcohol. Reporting alcohol abuse was significantly predicted by sex, family history of alcohol use and experimenting with alcohol. Religiosity mediated lower alcohol use whereas family history of alcohol use and experimenting with alcohol promoted alcohol use and abuse. Conclusion: Families, religious groups and societal factors may be the specific niches for intervention on alcohol use among university students.

Keywords: religiosity, alcohol use, protective factors, university students

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Authors: Sylvie Sossou, Grégoire Gansou, Ildevert Egue

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Introduction: The mission of the family and the school is to educate and train citizens of the city. But the family’s values , parental roles, respect for life collapse in their traditional African form. Indeed laxity with regard to divorce, liberal ideas about child rearing influence the emotional life of the latter. Several causes may contribute to the decline in academic performance. In order to seek a psychological solution to the issue, a study was conducted in 6 schools at the 9th district in Cotonou, cosmopolitan city of Benin. Objective: To evaluate the impact of single parenthood on the psycho child development. Materials and Methods: Questionnaires and interviews were used to gather verbal information. The questionnaires were administered to parents and children (schoolchildren 4, 5 and six form) from 7 to 12 years in lone parenthood. The interview was done with teachers and school leaders. We identified 209 cases of children living with a "single-parent" and 68 single parents. Results: Of the 209 children surveyed the results showed that 116 children are cut relational triangle in early childhood (before 3 years). The psychological effects showed that the separation has caused sadness for 52 children, anger 22, shame 17, crying at 31 children, fear for 14, the silence at 58 children. In front of complete family’s children, these children experience feelings of aggression in 11.48%; sadness in 30.64%; 5.26% the shame, the 6.69% tears; jealousy in 2.39% and 2.87% of indifference. The option to get married in 44.15% of children is a challenge to want to give a happy childhood for their offspring; 22.01% feel rejected, there is uncertainty for 11.48% of cases and 25.36% didn’t give answer. 49, 76% of children want to see their family together; 7.65% are against to avoid disputes and in many cases to save the mother of the father's physical abuse. 27.75% of the ex-partners decline responsibility in the care of the child. Furthermore family difficulties affecting the intellectual capacities of children: 37.32% of children see school difficulties related to family problems despite all the pressure single-parent to see his child succeed. Single parenthood affects inter-family relations: pressure 33.97%; nervousness 24.88%; overprotection 29.18%; backbiting 11.96%, are the lives of these families. Conclusion: At the end of the investigation, results showed that there is a causal relationship between psychological disorders, academic difficulties of children and quality of parental relationships. Other cases may exist, but the lack of resources meant that we have only limited at 6 schools. Early psychological treatment for these children is needed.

Keywords: single-parent, psycho child, school, Cotonou

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Authors: Cely D. Magpantay, Geolynne Marie Adel, Cire-rine Mae Concepcion, Dessa Jean Orcajada, Jorgette Andrea Santos, Orian Laurace Canaman

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Mental illness initiative is very relevant in promoting the Mental Health Bill act of 2017. In the Philippines alone, the public is more open and receptive to people at risks with a mental condition. Although it is uncommon that parents can become more psychologically unfit compared to their children, research shows that parents who are suffering from mental illness have a more significant negative effect than another family member. The impact of parent’s mental health can put their children more susceptible to acquire the same disorder. The aim of the study is to explore the lived experiences of children whose parents suffered from mental illness. It discusses how their parent's mental condition in, anyway, affects their psychological development. Using Phenomenological Qualitative Research, an in-depth, interview was conducted to five (5) consenting adults who lived with their parents diagnosed with a mental disorder. Results are clustered into four themes. The first theme is the negative emotion towards parents, the second theme is the psychosocial dynamics in caring for the patient, third is accepting the disease, and fourth is a general perspective on the family. Each themes is validated by experts and the participants. This theme generates subcomponent like isolation, shallow relationship and debt of gratitude. Along with these themes comes the fear of having a family emerged. There is a growing need to strengthen the family ties even more because of parent’s mental illness. Therefore, parental mental illness has an effect on the children’s psychological and social development.

Keywords: lived experience in Philippines, mental health, parental mental illness, psychosocial dynamics

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Authors: Khulood Miliany

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This study examines the media habits of young people in Saudi Arabia, in particular their use of the Internet and television in the domestic sphere, and how use of the Internet impacts upon other activities. In order to address the research questions, focus group interviews were conducted with Saudi university students. The study found that television has become a central part of social life within the household where television represents a main source for family time, particularly in Ramadan while the Internet is a solitary activity where it is used in more private spaces. Furthermore, Saudi females were also more likely to have their Internet access monitored and circumscribed by family members, with parents controlling the location and the amount of time spent using the Internet.

Keywords: domestication of technology, internet, social context, television, young people

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Authors: Chamaraja Parulli

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Family is an important social institution devoted to the growth of a child, and parents are the important agents of socialization. Mentally challenged children are those who are affected by intellectual disability, which is manifested by limitation in intellectual functioning and adoptive behavior. Intellectual disability affects about 3-4 percentage of the general population. Intellectual disability is caused by genetic condition, problems during pregnancy, problems during childbirth, or illness. Mental retardation is the world’s most complex and challenging issue. The stigmatization of disability results in social and economic marginalization. Parents of the mentally challenged children will have a very high level of parenting stress, which is significantly more than the stress perceived by the parents of the children without disability. The prevalence of severe mental disorder called Schizophrenia is among 1.1 percent of the total population in India. On the other hand, 11 to 12 percent is the overall lifetime occurrence rate of mental disorders. While the government has a separate program for mental health, the segment is marred by lack of adequate doctors and infrastructure. Mentally retarded children have certain limitations in mental functioning and skills, which makes them slow learners in speaking, walking, and taking care of their personal needs such as dressing and eating. Accepting a child with mental handicap becomes difficult for parents and to the whole family, as they have to face many problems, including those of management, finance, deprivation of rest, and leisure. Also, the problems faced by the parents can be seen in different areas like – educational, psychological, social, emotional, financial and family related issues. The study brought out various difficulties and problems faced by the parents as well as family members. The findings revealed that the mental retardation is not only a medico-psychological problem but also a socio-cultural problem. The study results, however, indicate that the quality of life of the family having children with mental retardation can be improved to a greater extent by building up a child-friendly ambience at home. The main aim of the present study is to assess the problems faced by the parents of mentally challenged children, with the help of personal interview data collected from the parents of mentally challenged children, residing in Shimoga District of Karnataka State, India. These individuals were selected using stratified random sampling method. Organizing effective intervention programs for parents, family, society, and educational institutions towards reduction of family stress, augmenting the family’s strengths, increasing child’s competence and enhancing the positive attitudes and values of the society will go a long way for the peaceful existence of the mentally challenged children.

Keywords: mentally challenged children, intellectual disability, special children, social infrastructure, differently abled, psychological stress, marginalization

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Authors: Nurgul A. Abenova, Gaukhar S. Dilmagambetova, Lazzat M. Zhamaliyeva

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Professionalism is a core competency that all medical students must achieve throughout their studies. Clinical knowledge, good communication skills and an understanding of ethics form the basis of professionalism. Patients, medical societies and accrediting organizations expect future specialists to be professionals in their field, which in turn leads to the best clinical results. Currently, there are no studies devoted to the study of medical professionalism in the Republic of Kazakhstan. As a result, medical education in the Kazakhstani system has a limited perception of the concept of professionalism compared to many Western medical schools. Thus, the primary purpose of this study is to analyze the perception of medical professionalism among residents and teachers of family medicine at the West Kazakhstan Marat Ospanov Medical University. А qualitative research method was used based on the content analysis methodology. A focus group discussion was held with 60 residents and 12 family medicine teachers to gather participants' views and experiences in the field of medical professionalism. The received information was processed using the MAXQDA-2020 software package. Respondents were selected for the study based on their age, gender, and educational level. The results of the conducted survey confirmed the respondents’ acknowledgment of the basic attributes of professionalism, such as medical knowledge and skills (more than 40% of the answers), personal and moral qualities of the doctor (more than 25% of the answers), respect for the interests of the patient (15% of the answers), the relationship between the doctor and the patient and among professionals themselves (15% of responses). Another important discovery of the survey was that residents are five times more likely to define the relationship between a doctor and a patient in a model “respect for the interests of the patient” in comparison with teachers of family medicine, who primarily reported responsibility and collegiality to be the basis for the development of professionalism and traditionally view doctor-patient relationship to be formed on the basis of paternalism defined by a high degree of control over patients. This significant difference demonstrates a rift among specialists in the field of family medicine, which causes a lot of problems. For example, nowadays, professional family doctors regularly face burnout problem due to many reasons and factors that force them to abandon their jobs. In addition to that, elements of professionalism such as reflective skills, time management and feedback collection were presented to the least extent (less than 1%) by both groups, which differs from the perception of the Western medical school and is a significant issue that needs to be solved. The qualitative nature of our study provides a detailed understanding of medical professionalism in the context of the Central Asian healthcare system, revealing many aspects that are inferior to the Western medical school counterparts and provides a solution, which is to teach the attributes and skills required for medical professionalism at all stages of medical education of family doctors.

Keywords: family medicine, family doctors, medical professionalism, medical education

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Authors: Rehan Mohammad

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Background: Improved Water, Sanitation and Hygiene (WASH) practices in schools ensure children’s health, well-being and cognitive performance. In India under various WASH interventions in schools, teachers, and other staff make every possible effort to educate children about personal hygiene, sanitation practices and harms of open defecation. However, once children get back to their families, they see other practicing inappropriate WASH behaviors, and they consequently start following them. This show disconnect between school behavior and family behavior, which needs to be bridged to achieve desired WASH outcomes. Aims and Objectives: The aim of this study is to assess the factors causing disconnect of WASH-related behaviors between school and the family of children. It also suggests behavior change interventions to bridge the gap. Methodology: The present study has chosen a mixed- method approach. Both quantitative and qualitative methods of data collection have been used in the present study. The purposive sampling for data collection has been chosen. The data have been collected from 20% children in each age group of 04-08 years and 09-12 years spread over three primary schools and 20% of households to which they belong to which is spread over three slum communities in south district of Delhi. Results: The present study shows that despite of several behavior change interventions at school level, children still practice inappropriate WASH behaviors due to disconnect between school and family behaviors. These behaviors show variation from one age group to another. The inappropriate WASH behaviors being practiced by children include open defecation, wrong disposal of garbage, not keeping personal hygiene, not practicing hand washing practices during critical junctures and not washing fruits and vegetables before eating. The present study has highlighted that 80% of children in the age group of 04-08 years still practice inappropriate WASH behaviors when they go back to their families after school whereas, this percentage has reduced to 40% in case of children in the age group 09-12 years. Present study uncovers association between school and family teaching which creates a huge gap between WASH-related behavioral practices. The study has established that children learn and de-learn the WASH behaviors due to the evident disconnect between behavior change interventions at schools and household level. The study has also made it clear that children understand the significance of appropriate WASH practices but owing to the disconnect the behaviors remain unsettled. The study proposes several behavior change interventions to sync the behaviors of children at school and family level to ensure children’s health, well-being and cognitive performance.

Keywords: behavioral interventions, child health, family behavior, school behavior, WASH

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Authors: Shweta Jha, Nandita Chaube

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The concept of self has a major role to play in the study of personality which drives the current study in its present form. This is a case of Miss S, a 17-year-old Hindu, currently in eleventh standard, with no family history of mental illness but with a past history of inability to manage relationships, multiple emotional and sexual relationships, repeated self harming behaviour, and sexual abuse over a period of 2 months at the age of 10 years. She comes with a psychiatric history of one episode of dissociative fall followed by a stressful event which left the patient with many psychological disturbances matching the criterion of Cluster B and C traits. Current episode precipitated due to the relationship failure, predisposing factor is her personality traits, and poor social and family support. Considering the patient’s aspiration for positivity and demand of the therapy, ventilation sessions were carried out which made her capable of understanding and dealing with her negative emotions, also strengthened mother child bond, helped her maintain meaningful and healthy relationships, also helped her increase her problem solving ability and adaptive coping skills making her feel more positive and acceptable towards herself, family members and others.

Keywords: cluster B and C traits, personality, therapy, self

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Authors: Mohinder Kumar

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Sports are considered as the very prominent social institution in almost every society because it reflects the mores, values, and general culture of a society. Sports activity tend to pave the foundation for learning acceptable values and beliefs and for acquiring desirable character traits such as self-discipline, sportsmanship, and an appreciation for hard work, fairness, self-respect, leadership, followership, justice, perseverance, competition, and goal attainment. The present study focuses on ideal ways of socializing youngsters into sports. Influences of some socializing agents (e.g. family, school, community) are reviewed and suggestions made as to how these socializing agents can be oriented and made effective in carrying out functional processes toward target ends.

Keywords: sports, socializing, family, community, society

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Authors: Bu Kyung Park

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Background: The survival rate of pediatric cancer patients has been increased. Thus, the needs of long-term management and follow-up education after discharge continue to grow. Purpose: The purpose of this study was to explore the experiences of pediatric cancer patients and their families from first diagnosis to returning their social life. The ultimate goal of this study was to assess which information and intervention did pediatric cancer patients and their families required and needed, so that this could provide fundamental information for developing educational content of web-based intervention program for pediatric cancer patients. Research Approach: This study was based on a descriptive qualitative research design using semi-structured focus group interview. Participants: Twelve pediatric cancer patients and 12 family members participated in a total six focus group interview sessions. Methods: All interviews were audiotaped after obtaining participants’ approval. The recordings were transcribed. Qualitative Content analysis using the inductive coding approach was performed on the transcriptions by three coders. Findings: Eighteen categories emerged from the six main themes: 1) Information needs, 2) Support system, 3) Barriers to treatment, 4) Facilitators to treatment, 5) Return to social life, 6) Healthcare system issues. Each theme had both pediatric cancer patients’ codes and their family members’ codes. Patients and family members had high information needs through the whole process of treatment, not only the first diagnosis but also after completion of treatment. Hospitals provided basic information on chemo therapy, medication, and various examinations. However, they were more likely to rely on information from other patients and families by word of mouth. Participants’ information needs were different according to their treatment stage (e.g., first admitted patients versus cancer survivors returning to their social life). Even newly diagnosed patients worried about social adjustment after completion of all treatment, such as return to school and diet and physical activity at home. Most family members had unpleasant experiences while they were admitted in hospitals and concerned about healthcare system issues, such as medical error and patient safety. Conclusions: In conclusion, pediatric cancer patients and their family members wanted information source which can provide tailored information based on their needs. Different information needs with patients and their family members based on their diagnosis, progress, stage of treatment were identified. Findings from this study will be used to develop a patient-centered online health intervention program for pediatric cancer patients. Pediatric cancer patients and their family members had variety fields of education needs and soak the information from various sources. Web-based health intervention program for them is required to satisfy their inquiries to provide reliable information.

Keywords: focus group interview, family caregivers, pediatric cancer patients, qualitative content analysis

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Authors: Don Anushka Sandaruwan Elvitigala, P. D. S. U. Wickramasinghe, Jehee Lee

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Cystatins are a large superfamily of proteins which act as reversible inhibitors of cysteine proteases. Papain proteases and cysteine cathepsins are predominant substrates of cystatins. Cystatin superfamily can be further clustered into three groups as Stefins, Cystatins, and Kininogens. Among them, stefines are also known as family 1 cystatins which harbors cystatin Bs and cystatin As. In this study, a homologue of family one cystatins more close to cystatin Bs was identified from Korean black rockfish (Sebastes schlegeli) using a prior constructed cDNA (complementary deoxyribonucleic acid) database and designated as RfCyt1. The full-length cDNA of RfCyt1 consisted of 573 bp, with a coding region of 294 bp. It comprised a 5´-untranslated region (UTR) of 55 bp, and 3´-UTR of 263 bp. The coding sequence encodes a polypeptide consisting of 97 amino acids with a predicted molecular weight of 11kDa and theoretical isoelectric point of 6.3. The RfCyt1 shared homology with other teleosts and vertebrate species and consisted conserved features of cystatin family signature including single cystatin-like domain, cysteine protease inhibitory signature of pentapeptide (QXVXG) consensus sequence and N-terminal two conserved neighboring glycine (⁸GG⁹) residues. As expected, phylogenetic reconstruction developed using the neighbor-joining method showed that RfCyt1 is clustered with the cystatin family 1 members, in which more closely with its teleostan orthologues. An SYBR Green qPCR (quantitative polymerase chain reaction) assay was performed to quantify the RfCytB transcripts in different tissues in healthy and immune stimulated fish. RfCyt1 was ubiquitously expressed in all tissue types of healthy animals with gill and spleen being the highest. Temporal expression of RfCyt1 displayed significant up-regulation upon infection with Aeromonas salmonicida. Recombinantly expressed RfCyt1 showed concentration-dependent papain inhibitory activity. Collectively these findings evidence for detectable protease inhibitory and immunity relevant roles of RfCyt1 in Sebastes schlegeli.

Keywords: Sebastes schlegeli, family 1 cystatin, immune stimulation, expressional modulation

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Authors: Marcio Emilio Dos Santos, Kelly C. F. Dos Santos

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Caregivers of patients diagnosed with ASD are subjected to high stress situations due to the complexity and multiple levels of daily activities that require the organization of events, behaviors and socioemotional situations, such as immediate decision making and in public spaces. The cognitive and emotional requirement needed to fulfill this caregiving role exceeds the regular cultural process that adults receive in their process of preparation for conjugal and parental life. Therefore, in many cases, caregivers present a high level of overload, poor capacity to organize and mediate the development process of the child or patient about their care. Aims: Improvement in the cognitive and emotional capacities related to the caregiver function, allowing the reduction of the overload, the feeling of incompetence and the characteristic level of stress, developing a more organized conduct and decision making more oriented towards the objectives and procedural gains necessary for the integral development of the patient with diagnosis of ASD. Method: The study was performed with 20 relatives, randomly selected from a total of 140 patients attended. The family members were submitted to the Wechsler Adult Intelligence Scale III intelligence test and the Family assessment Management Measure (FaMM) questionnaire as a previous evaluation. Therapeutic activity in a small group of family members or caregivers, with weekly frequency, with a minimum workload of two hours, using the Feuerstein Instrumental Enrichment Cognitive Development Program - Feuerstein Instrumental Enrichment for ten months. Reapplication of the previous tests to verify the gains obtained. Results and Discussion: There is a change in the level of caregiver overload, improvement in the results of the Family assessment Management Measure and highlight to the increase of performance in the cognitive aspects related to problem solving, planned behavior and management of behavioral crises. These results lead to the discussion of the need to invest in the integrated care of patients and their caregivers, mainly by enabling cognitively to deal with the complexity of Autism. This goes beyond the simple therapeutic orientation about adjustments in family and school routines. The study showed that when the caregiver improves his/her capacity of management, the results of the treatment are potentiated and there is a reduction of the level of the caregiver's overload. Importantly, the study was performed for only ten months and the number of family members attended in the study (n = 20) needs to be expanded to have statistical strength.

Keywords: caregiver overload, cognitive development program ASD caregivers, feuerstein instrumental enrichment, family assessment management measure

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Authors: Lutaf Ali, Haris Ahmed, Hina Najmi

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Background: Access, better counseling and quality in the provision of family planning services remain big challenges. Sukh Initiative (a project of three different foundations) is a multi-pronged approach, working in one million underserved population residing peri urban slums in Karachi and providing door to door services by lady health workers (LHWs) and community health workers (CHWs) linked with quality family planning and reproductive (FP/RH) services both at public and private health care facilities. Objective: To assess the improvement in family planning and reproductive health behavior among MWRAs by improving access in peri-urban-underserved population of Karachi. Methodology: Using cross sectional study design 3866 married women with reproductive age (MWRAs) were interviewed in peri urban region of Karachi during November 2016 to January 2017. All face to face structured interviews were conducted with women aged 15-49 currently living with their husbands. Based on the project intervention question on reproductive health were developed and questions on contraceptive use were adopted from PDHS- Pakistan 2013. Descriptive and inferential analysis was performed on SPSS version 22. Results: 65% of population sample are literate, 51% women were in young age group- 15–29. On the poverty index, 6% of the population sample living at national poverty line 1.25$ and 52% at 2.50$. During the project years 79% women opted for facility based delivery; private facilities are the priority choice. 61.7% women initiated the contraceptive use in last two years (after the project).Use of family planning was increased irrespective of education level and poverty index- about 55.5% women with no formal education are using any form of contraception and trend of current modern contraceptives across poverty scores strata equally distributed amongst all groups. Age specific modern contraceptive prevalence rate (mCPR)(between 25-34) was found to be 43.8%. About 23% of this contraceptive ascertained from door to door services- short acting, (pills and condoms) are common, 29.5% from public facilities and 47.6% are from public facilities in which long acting and permanent method most received methods. Conclusion: Strategy of expanding access and choice in the form of providing family planning information and supplies at door step and availability of quality family planning services in the peripheries of underserved may improve the behavior of women regarding FP/RH.

Keywords: access, family planning, underserved population, socio-demographic facts

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Authors: Beng Zhen Yeow

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In most work that involves children, the voice of the children is often not heard. This is ironic since a lot of discussions might involve their welfare and safety. It might seem natural that the professionals should hear from them about what they wish for instead of deciding what is best for them. However, this, unfortunately, might be more the exception than the norm in most case and hence in many instances, children are merely 'subjects' in conversations about safety instead of active participants in the construction or creation of safety in the family. There might be many reasons why it does not happen in our work. Firstly, professionals have learnt how to 'socialise' into their professional roles and hence in the process become 'un-childlike'. Secondly, there is also a lack of professional training with regards to how to talk with children. Finally, there might be also a lack of concrete tools and techniques that are developed to facilitate the process. In this paper, the case study method is used to show how the idea of safety could be concretised and discussed with children and their family members, and hence making them active participants and co-creators of their own safety. Specific skills and techniques are highlighted through the case study. In this case, there was improvement in outcomes like no repeated offence or abuse. In addition, children were also able to advocate for their own safety after six months of intervention and how the family members were able to explicitly say what they can do to improve safety. The professionals in the safety network reported significant improvements. On top of that, the abused child who was removed due to child protection concerns, had verbalized observations of change in mother’s parenting abilities, and has requested for home leave to begin due to ownership of safety planning and having confidence to co-create safety for her siblings and herself together with the professionals in the safety network. Children becoming active participants in the co-creation of safety not only serve the purpose in allowing them to own a 'voice' but at the same time, give them greater confidence to protect themselves at home and in other contexts outside of home.

Keywords: partnering for safety, collaborative social work, family and systemic psychotherapy, child protection

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Authors: Siti Napsiyah, Ismet Firdaus, Lisma Dyawati Fuaida, Ellies Sukmawati

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This paper examines the existence, role, and challenge of Family Service Agency, in Bahasa Indonesia known as Lembaga Konsultasi Kesejahteraan Keluarga (LK3) of Syarif Hidayatullah State Islamic University (UIN) Jakarta. It has been established since 2012. It is an official agency under the Ministry of Social Affairs of Indonesia. The establishment of LK3 aims to provide psychosocial services for families of students who has psychosocial problem in their life. The study also aims to explore the trend of psychosocial problems of its client (student) for the past three years (2014-2016). The research method of the study is using a qualitative social work research method. A review of selected data of the client of LK3 UIN Syarif Hidayatullah Jakarta around five main issues: Family background, psychosocial mapping, potential resources, student coping mechanism strategy, client strength and network. The study also uses a review of academic performance report as well as an interview and observation. The findings show that the trend of psychosocial problems of the client of LK3 UIN Syarif Hidayatullah Jakarta vary as follow: bad academic performance, low income family, broken home, domestic violence, disability, mental disorder, sexual abuse, and the like. LK3 UIN Syarif Hidayatullah Jakarta has significant roles to provide psychosocial support and services for the survival of the students to deal with their psychosocial problems. Social worker of LK3 performs indigenous social work practice: individual counseling, family counseling, group therapy, home visit, case conference, Islamic Spiritual Approach, and Spiritual Emotional Freedom Technique (SEPT).

Keywords: psychosocial, indigenizing social work, resiliency, coping mechanism

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Authors: Farjina Malek, Julie King, Niki Edwards

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Across the globe more than a billion people live with a disability and a further billion people, mostly carers, are indirectly impacted. While prevalence data is problematic, it is estimated that more than 15% of the population in Bangladesh live with a disability. Disability service infrastructure in Bangladesh is under-developed; and consequently, the onus of care falls on family, especially on mothers. Within the caring role, mothers encounter many challenging experiences which are not only due to the lack of support delivered through the Bangladeshi health care system but also related to the existence of stigma and perception around disability in the Bangladeshi society. Within this perception, the causes of disability are mostly associated with 'God’s will'; 'possession of ghosts on the disabled person'; and 'karma or the result of past sins of the family members especially the mothers'. These beliefs are likely to have a significant impact on the well-being of mothers and their caring experience of children with disability. This is an ongoing qualitative study which is conducting in-depth interviews with 30 mothers from five districts (Dhaka, Mymensingh, Manikganj, Tangail, and Gazipur) of Bangladesh with the aim to explore the impact of social perception and stigma around physical disability on the caring role of the mothers of children with physical disability. The major findings of this study show that the social perception around disability and the social expectation from a mother regarding her caring role have a huge impact on the well-being of mothers. Mothers are mostly expected to take their child on their lap to prove that they are ‘good mother’. These practices of lifting their children with physical disability and keeping them on the lap for a long time often cause chronic back pain of the mothers. Existing social beliefs consider disability as a ‘curse’ and punishment for the ‘sins’ of the family members, most often by the mother. Mothers are blamed if they give birth to ‘abnormal’ children. This social construction creates stigma, and thus, the caring responsibility of mothers become more challenging. It also encourages the family and mothers to hide their children from the society and to avoid seeking accessible disability services. The mothers also compromise their careers and social interaction as they have to stay with their children at home, and that has a significant impact on personal wellbeing, income, and empowerment of the mothers. The research is informed by intersectional theory and employed an interpretive phenomenological methodology to explore mothers’ experience of caring their children with physical disability, and the contribution and impact of key relationships within the family and the intersection with community and services.

Keywords: mother, family carer, physical disability, children, social stigma, key relationship

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Authors: Hideo Suzuki, Yuya Kiyonobu, Kotaro Matsushita, Masaki Hanada, Rie Suzuki, Noriko Niijima, Noriko Uosaki, Tadao Nakamura

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People often worry about their elderly family members who are living by themselves or staying alone somewhere. An intelligent watch-over system for such elderly people, using a Raspberry Pi IoT device, has been newly developed to monitor those who live or stay separately from their families and alert them if a problem occurs. The system consists of motion sensors and temperature-humidity combined sensors that are located at seven points within an elderly person's home. The intelligent algorithms of the system detect signs and the possibility of unhealthy situations arising for the elderly relative; e.g., an unusually long bathing time, or a visit to a restroom, too high a room temperature, etc., by using data cached by the sensors above, at seven points within their house. The system gives more consideration to the elderly person's privacy, by using the sensors above, instead of using cameras and microphones placed around the house. The system invented and described here, can send a Twitter direct message to designated family members when an elderly relative is possibly in an unhealthy condition. Thus the system helps decrease family members' anxieties regarding their elderly relatives and increases their sense of security.

Keywords: elderly person, IoT device, Raspberry Pi, watch-over system

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Authors: Ewelina Zdebska

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A social worker is an integral part of an interdisciplinary team working with the child and his family in a terminal state. Social support is an integral part of the medical procedure in the care of hospice. This is the basis and prerequisite of full treatment and good care of the child - patient, whose illness often finds at least the expected period of his life when his personal and legal issues are not regulated, and the family burdened with the problem requires care and support specialists - professionals. Hospice for Children in Krakow: a palliative care team operating in the province of Krakow and Malopolska, conducts specialized care for terminally ill children in place of their residence from the time when parents and doctors decided to end of treatment in hospital, allows parents to carry out medical care at home, provides parents social and legal assistance and provides care, psychological support and friendship to families throughout the life of the child's illness and after his death, as long as it is needed. The social worker in a hospice does not bear the burden of solving social problems, which is the responsibility of other authorities, but provides support possible and necessary at the moment. The most common form of assistance is to provide information on benefits, which for the child and his family may be subject to any treatment and fight for the life and health of a child. Employee assists in the preparation and completion of documents, requests to increase the degree of disability because of progressive disease or Allowance care because of the inability to live independently. It works in settling all the issues with the Department of Social Security, as well as with the Municipal and District Team Affairs of disability. Seeking help and support using multi-faceted childcare. With the Centres for Social Welfare contacts are also often on the organization of additional respite care for the sick at home (care), especially in the work of the other members of the family or if the family can not cope with the care and needs extra help. Hospice for Children in Cracow completing construction of Poland's first Respite Care Centre for chronically and terminally ill children, will be an open house where children suffering from chronic and incurable diseases and their families can get professional help, whenever - when they need it. The social worker has to pick up a very important role in caring for a terminally ill child. His presence gives a little patient and family the opportunity to be at this difficult time together while organizing assistance and support.

Keywords: social worker, care, terminal care, hospice

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Authors: Mary Bernardin, Margie Batek, Joseph Moen, David Schnadower

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Background: Exposure to violence not only has negative psychological impact on children but is a risk factor for children becoming recurrent victims of violence. However, little is known regarding the degree to which child victims of violence are exposed to trauma at home and in their community, or its association with specific psychological diagnoses. Objective: The aims of this study were to perform in-depth characterizations of family, community and psychological wellness amongst pediatric victims of interpersonal violence. Methods: As standard of care at the Saint Louis Children’s Hospital pediatric emergency department (ED), social workers perform in-depth interviews with all children presenting due to violent interpersonal encounters. In this retrospective cross-sectional study, we collected data from social work interviews on family structure, exposure to violence in the community and the home, as well as history of psychological diagnoses amongst children ages 8-19 years who presented to the ED for injuries related to interpersonal violence from 2014-2017. Results: A total of 407 patients presenting to the ED for an interpersonal violent encounter were analyzed. The average age of studied youths was 14.7 years (SD 2.5). Youths were 97.5% African American ethnicity and 66.6% male. 67.8% described their home having a nonnuclear family structure, 50% of which reported living with a single mother. Of the 21% who reported having incarcerated family members, 56.3% reported their father being incarcerated, 15% reported their mother being incarcerated, and 12.5% reported multiple family members being incarcerated. 11.3% reported witnessing domestic violence in their home. 12.8% of youths reported some form of child abuse. The type of child abuse was not specified in 29.3% of cases, but physical abuse (32.8%) followed by sexual abuse (22.4%) were the most commonly reported. 14.5% had history of placement in foster care and/or adoption. 64% reported having witnessed violence in their community. 30.2% reported having lost friends or family due to violence, and of those, 26.4% reported the loss of a cousin, 18.9% the loss of a friend, 16% the loss of their father, and 12.3% the loss of their brother due to violence. Of the 22.4% youths with psychiatric diagnose(s), 48.4% had multiple diagnoses, the most common of which were ADD/ADHD (62.6%), followed by depression (31.9%), bipolar disorder (27.5%) and anxiety (15.4%). Conclusions: A remarkable proportion of children presenting to EDs due to interpersonal violence have a history of exposure to instability and violence in their homes and communities. Additionally, psychological diagnoses are frequent among pediatric victims of violence. More research is needed to better understand the association between trauma exposure, psychological health and violent victimization amongst children.

Keywords: community violence, emergency department, pediatric interpersonal violence, pediatric trauma, psychological effects of trauma

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Authors: Esther Yin-Nei Cho

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There is inconsistency among studies about whether there is an association between poverty and the subjective wellbeing of children. Some have found a positive association, though its magnitude could be limited, others have shown no association. One possible explanation for this inconsistency is that household income, an often-adopted measure of child poverty, may not accurately and stably reflect the actual life experience of children. Some studies have suggested, however, that material deprivation covering various dimensions of children’s lives could be a better measure of child poverty. Another possible explanation for the inconsistency is that the link between poverty and subjective wellbeing of children may not be that straightforward, as there could be underlying mechanisms, such as mediation and moderation, influencing its direction or strength. While a mediator refers to the mechanism through which an independent variable affects a dependent variable, a moderator changes the direction or strength of the relationship between an independent variable and a dependent variable. As suggested by empirical evidence, family relationships and friendships could be potential mediators or moderators of the link between poverty and subjective well-being: poverty affects relationships; relationships are an important element in children’s subjective well-being; and economic status affects child outcomes, though not necessarily subjective wellbeing, through relationships. Since the potential links have not been adequately understood, this study fills this gap by examining the possible role of family relationships and friendships as mediators or moderators between poverty (using child-derived material deprivation as measure) and the subjective wellbeing of children. Improving subjective wellbeing is increasingly considered as a policy goal. The finding of no or a limited association between poverty and subjective wellbeing of children could be a justification for less effort to improve poverty in this regard. But if the observed magnitude of that association is due to some underlying mechanisms at work, the effect of poverty may be underestimated and the potentially useful strategies that take into account both poverty and other mediators or moderators for improving children’s subjective well-being may be overlooked. Multiple mediation, and multiple moderation models, based on regression analyses, are performed to a sample of approximately 1,600 children, who are aged 10 to 15, from the wellbeing survey conducted by The Children’s Society in England from 2010 to 2011. Results show that the effect of children’s material deprivation on their subjective well-being is mediated by their family relationships and friendships. Moreover, family relationships are a significant moderator. It is found that the negative impact of child deprivation on subjective wellbeing could be exacerbated if family relationships are not going well, while good family relationships may prevent the further decline in subjective well-being. Policy implications of the findings are discussed. In particular, policy measures that focus on strengthening the family relationships or nurturing home environment through supporting household’s economic security and parental time with children could promote the subjective wellbeing of children.

Keywords: child poverty, mediation, moderation, subjective well-being of children

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Authors: Arshad Hussain

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Background: Sukh Initiative is a multi-donor funded, family planning and reproductive health project, primed by Aman Healthcare Services; implemented through a consortium of local and international organizations, in a selected one million underserved peri-urban population of Karachi, Sindh; which aims at increasing modern contraceptive prevalence rate by 15 percentage point. Objective: To empower women to access contraception by increasing knowledge, improving quality of services and expanding the basket of choices; contributing to the goals of FP2020. Methods: A five years project has a multi-pronged approach with door to door services by LHWs and CHWs in an LHWs covered population and provision of quality FP/RH services both at public and private health care facilities. The project engages youth (12-16 years) both with community and at secondary schools to mentor them for responsible adulthood with life skilled base initiative. A 24/7 availability of youth and FP helpline service provides counselling, referrals in addition with a follow-up mechanism. Results: 131,810 MWRAs were reached by 191 community health workers through 29,693 of community support group meetings and 166,775 house hold visits. These MWRAs were counselled on FP related myths and misconception and referred to 216 providers trained for quality family planning services and maintaining average 64% quality scores in 43 public health and 35 private facilities in the project area. Of those referred 26% MWRAs opted modern contraception with 17.56% in LARCs and 41% PPFP as compared to baseline. Aman TeleHealth is linked with 24/7 counselling, referrals and post services follow-ups to clients, showing 14% proportion of FP call volume. Sukh has a unique role in engaging all partners on youth SRHR issues through family life education sessions, 30 higher sec. schools in Sukh area have been provided LSBE to 16,000 students (aged 15-17), and in community approximately 10, 496 girls and boys have received SRHR information. Conclusion: Through individual counselling, access to quality family planning services and involvement of stakeholders, Suk created an enabling environment to rapid increase in family planning in the project intervention area.

Keywords: family planning and reproductive health, married women with reproductive age, urban squatter, Pakistan

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Authors: Giedre Sirvinskiene, Kastytis Smigelskas

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Quality of family relations is an important factor of child development, however, the role of joint family activities on adolescent happiness still needs investigation. The aim of this study is to analyze associations between happiness of school-aged children and parental involvement. The analysis involves Lithuanian data from the cross-sectional Health Behaviour in School Aged Children (HBSC) study. The sample comprised 5730 children aged 11–15 years. Results: The odds of happiness was 2.38 times higher if children were living together with mother (95% CI: 1.81–3.13) and 1.81 times – with father (95% CI: 1.53–2.15). However, the likelihood of happiness was 7.21 times lower if adolescent had difficulties to talk with mother (95% CI: 5.42–9.61) and 6.40 times – with father (95% CI: 4.80–8.56). The joint daily adolescents-parents activities also predict the odds for happiness: joint TV watching by 5.96 times (95% CI: 4.21–8.43), having meals together by 7.02 times (95% CI: 4.77–10.32), going for a walk together 4.30 times (95% CI: 2.96–6.26), visiting places by 6.85 times (95% CI: 4.74–9.90), visiting friends and relatives by 7.13 times (95% CI: 4.87–10.43), sporting by 2.76 (95% CI: 1.83–4.18) as well as discussing various things by 7.35 times (95% CI: 5.50–9.82). Conclusions: Joint parents-adolescents activities and communication are related with greater happiness of adolescent. Though adolescence is a period when the relationships with peers get more importance, the communication and joint activities with parents remain a significant factor of adolescent happiness.

Keywords: adolescent, family, happiness, school-age

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Authors: Hari Shankar, Kshitij Raj, Priya Keshari, Pragya Singh

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Headache is one of the most ubiquitous and frequent neurological disorders interfering with everyday life in all countries. India appears to be no exception. Objectives are to assess the prevalence of headache among adult population in urban area of Varanasi and to find out factors influencing the occurrence of headache. A community based cross sectional study was conducted among adult population in urban area of Varanasi district, Uttar Pradesh, India. Total 151 eligible respondents were interviewed by simple random sampling technique. Proportion percentage and Chisquare test were applied for data analysis. Out of 151 respondents, majority (58.3%) were females. In this study, 92.8% respondents belonged to age group 18-60 years while 7.2% was either 60 year of age or above. The overall prevalence of headache was found to be 51.1%. Highest and lowest prevalence of headache was recorded in age groups 18-29 year & 40-49 year respectively. Headache was 62.1% in illiterate and was 40.0% among graduate & above. Unskilled workers had more headache 73.1% than other type of occupation. Headache was more prevalent among unemployed (35.9%) than employed (6.4%). Females had higher family history of headache (48.9%) as compared to males (41.3%). Study subjects having peaceful relation with family members, relatives and neighbors had more headache than those having no peaceful relation.  

Keywords: family relationship, headache, neighbors, ration cards

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Authors: Jireh Reinor L. Vitto, Mylene S. Gumarao, Levy M. Fajanilan, Sheryll Ann M. Castillo, Leonardo B. Dorado, Miriam P. Narbarte

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Human trafficking may happen to anyone. The study aimed to explore the experiences of victim witnesses of human trafficking. It utilized a qualitative phenomenological study design. Eighteen women, 15 to 46 years old, had experienced human trafficking (sex or labor trafficking), and with a filed case or not. An in-depth semi-structured, open-ended interview was employed to gather information. Guardians were also interviewed for triangulation purposes. Findings showed that the participants experienced fatigue and abuse for their physical aspect and gained negative feelings such as burdened, sad, scared (fear), stress, anger, trauma, depress and suicidal thoughts for their psychological aspect. For the spiritual aspect, the participants concluded to have enhanced spiritual life where they knew about God, became closer to God, and learned how to pray. They also faced challenges such as dysfunctional family, delinquent friends, exploitation, problems kept from the family, and poverty, which resulted in their becoming victims of human trafficking. To cope with the situation, they utilized family support, prayers, guts or courage (lakas ng loob), negotiation with their employer, and support from kababayans. Their practices and mechanisms to recover were the Blas Ople Center, rescue/entrapment operation, shelter, and embassy. After the incident, the participants shared that they earned to have thoughts of having a good life without going abroad/makabayan, knowledge of overseas Filipino workers, wise choice of friends, contentment, and value for the family.

Keywords: victim-witnesses, human trafficking, lived experiences, challenges, coping strategies

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Authors: Elzbieta Sikorska-Simmons

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Advanced dementia is a progressive terminal brain disease that is accompanied by a syndrome of difficult to manage symptoms and complications that eventually lead to death. The management of advanced dementia poses major challenges to family caregivers who act as patient health care proxies in making medical treatment decisions. Little is known, however, about how they manage advanced dementia and how their treatment choices influence the quality of patient life. This prospective qualitative study examines the key medical treatment decisions that family caregivers make while managing advanced dementia. The term ‘family caregiver’ refers to a relative or a friend who is primarily responsible for managing patient’s medical care needs and legally authorized to give informed consent for medical treatments. Medical decision-making implies a process of choosing between treatment options in response to patient’s medical care needs (e.g., worsening comorbid conditions, pain, infections, acute medical events). Family caregivers engage in this process when they actively seek treatments or follow recommendations by healthcare professionals. Better understanding of medical decision-making from the family caregiver perspective is needed to design interventions that maximize the quality of patient life and limit inappropriate treatments. Data were collected in three waves of semi-structured interviews with 20 family caregivers for patients with advanced dementia. A purposive sample of 20 family caregivers was recruited from a senior care center in Central Florida. The qualitative personal interviews were conducted by the author in 4-5 months intervals. The ethical approval for the study was obtained prior to the data collection. Advanced dementia was operationalized as stage five or higher on the Global Deterioration Scale (GDS) (i.e., starting with the GDS score of five, patients are no longer able survive without assistance due to major cognitive and functional impairments). Information about patients’ GDS scores was obtained from the Center’s Medical Director, who had an in-depth knowledge of each patient’s health and medical treatment history. All interviews were audiotaped and transcribed verbatim. The qualitative data analysis was conducted to answer the following research questions: 1) what treatment decisions do family caregivers make while managing the symptoms of advanced dementia and 2) how do these treatment decisions influence the quality of patient life? To validate the results, the author asked each participating family caregiver if the summarized findings accurately captured his/her experiences. The identified medical decisions ranged from seeking specialist medical care to end-of-life care. The most common decisions were related to arranging medical appointments, medication management, seeking treatments for pain and other symptoms, nursing home placement, and accessing community-based healthcare services. The most challenging and consequential decisions were related to the management of acute complications, hospitalizations, and discontinuation of treatments. Decisions that had the greatest impact on the quality of patient life and survival were triggered by traumatic falls, worsening psychiatric symptoms, and aspiration pneumonia. The study findings have important implications for geriatric nurses in the context of patient/caregiver-centered dementia care. Innovative nursing approaches are needed to support family caregivers to effectively manage medical care needs of patients with advanced dementia.

Keywords: advanced dementia, family caregiver, medical decision-making, symptom management

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