Search results for: children’s illness experience

Authors: Margarida Maria Cabugueira Csutódio dos Santos, Joana Filipa Pintéus Pereira

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The way children understand the concept of health and illness influences their reaction in contexts where these concepts are present (e.g.,illness; vaccination). The recognition of the importance of children's beliefs/representations about health and disease has led to the development of models that seek to explain the development process of these concepts. In the construction of their representations, children are influenced not only by their cognitive competence but also by their life experiences. In the last 3 years, children have experienced a pandemic health crisis that has exposed them to anomalous and stressful situations. Objective: the aim of this study was (1) to identify children’s representations about disease (including symptoms, causes, control/treatment) and prevention (including health procedures and vaccines) and (2) whether COVID19 is mentioned and influences their representations. Methodology: a qualitative study in which 67 children with 7 to 10 years old (mean 8,8) participated. A semi-structured interview was used following the Bibace and Walsh model, focusing on the representation of the disease and its prevention. Results show a marked influence of the lived experience with regard to causes of the disease, disease control and treatment, and adherence to vaccination. Age-dependent differences were found with older children being able to talk about illness and contamination process and younger displaying more basic, concrete and rigid representations. Conclusions: The results of this study bring clues to the adequacy of communication with the child in the context of health and illness and discriminately in a future health pandemic crisis.

Keywords: childen, health beliefs, pediatrics, covid19, vaccines

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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: N. Anjana

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Worldwide, the prevalence of mental illnesses is increasing. The issues of persons with mental illness and their caregivers have been well documented in the literature. However, data regarding the factors affecting the caregiving experience of children with parental mental illnesses is sparse. This systematic review aimed to examine the existing literature of the factors affecting the caregiving experience of children of parents with mental illnesses. A comprehensive search of databases such as PubMed, EBSCO, JSTOR, ProQuest Central, Taylor and Francis Online, and Google Scholar were performed to identify peer-reviewed papers examining the factors associated with caregiving experiences of children with parental mental illnesses such as schizophrenia and major depression, for the 10-year period ending November 2019. Two researchers screened studies for eligibility. One researcher extracted data from eligible studies while a second performed verification of results for accuracy and completeness. Quality appraisal was conducted by both reviewers. Data describing major factors associated with caregiving experiences of children with parental mental illnesses were synthesized and reported in narrative form. Five studies were considered eligible and included in this review. Findings are organized under major themes such as the impact of parental mental illness on children’s daily life, how children provide care to their mentally ill parents as primary carers, social and relationship factors associated with their caregiving, positive and negative experiences in caregiving and how children cope with their experiences with parental mental illnesses. Literature relating to the caregiving experiences of children with parental mental illnesses is sparse. More research is required to better understand the children’s caregiving experiences related to parental mental illnesses so as to better inform management for enhancing their mental health, wellbeing, and caregiving practice.

Keywords: caregiving experience, children, parental mental illnesses, wellbeing

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Authors: Gemma Postil, Claire Zanin, Michael Halpin, Caroline Ritter

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Illness experience research typically focuses on people that are living with a medical condition; however, the broad consequences of the COVID-19 pandemic are impacting those without the virus itself, as many experienced extensive lockdowns, social isolation, and distress. Drawing on conceptual work in the illness experience literature, we argue that policy and social changes tied to COVID-19 produce biographical disruptions. In this sense, we argue that the COVID-19 pandemic produces illness experience without illness, as the pandemic comprehensively impacts health and biography. This paper draws on 30 in-depth interviews with young adults living in Prince Edward Island (PEI), which were conducted as part of a larger project to understand how young adults navigate compliance with the COVID-19 pandemic. We then inductively analyzed the interviews with a constructivist grounded theory approach. Specifically, we demonstrate that young adults living in PEI during the COVID-19 pandemic experienced biographical disruptions throughout the pandemic despite not contracting the virus. First, we detail how some participants experience biographical acceleration, with the pandemic accelerating relationships, home buying, and career planning. Second, we demonstrate biographical stagnation, wherein participants report being unable to pursue major life milestones. Lastly, we describe biographical regression, wherein participants feel they are losing ground during the pandemic and are actively falling behind their peers. These findings provide the novel application of illness experience concepts to the context of the COVID-19 pandemic, contribute to work on illness experience and ambiguity, and extend Bury’s conceptualization of biographical disruption. In conclusion, we demonstrate that young adults experienced the biographical disruption expected from having COVID-19 without having an illness, highlighting the depth to which the pandemic affected young adults.

Keywords: illness experience, lived experience, biographical disruption, COVID-19, young adults

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Authors: Camille Alexis-Garsee, Nicola Payne

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One consequence of the pandemic has been the debilitating health impact that some people experience over a longer period of time, known as long-COVID. This has been predominately researched in adults; however, there is emerging evidence on the effects of long-COVID in children. Research has indicated over half of children who contracted COVID-19 experienced persistent symptoms four months after a confirmed diagnosis. There is little research on the impact of this on children and their families. This study aimed to explore the experiences of children with long-COVID, to enable further understanding of the impacts and needs within this group. Semi-structured interviews, facilitated by children’s drawings, were conducted with 15 children (aged 9-16, 9 females). Inductive thematic analysis was used to analyze the data. The findings tell a story of loss, change and of resilience. Many children were unable to engage in normal daily activities and were unable to attend school, however, all employed self-management techniques to cope with symptoms and were positive for the future. Four main themes were identified: (1) Education challenges: although some schools tried to accommodate the child’s new limitations with provision of flexi-attendance, online classes and a reduced timetable, children struggled to keep up with their schoolwork and needed more support; (2) Disrupted relationships: children felt socially isolated; they were forced to give up co and extra-curricular activities, were no longer in contact with friendship groups and missed out on key experiences with friends and family; (3) Diverse health-related challenges: children’s symptoms affected daily functioning but were also triggers for changes in thoughts and mood; (4) Coping and resilience: children actively engaged in symptom management and were able to ‘self-pace’ and/or employ distraction activities to cope. They were also focused on living a ‘normal’ life and looked to the future with great positivity. A key challenge of the long-term effects of COVID is recognizing and treating the illness in children and the subsequent impact on multiple aspects of their lives. Even though children described feeling disconnected in many ways, their life goals were still important. A multi-faceted approach is needed for management of this illness, with a focus on helping these children successfully reintegrate into society and achieve their dreams.

Keywords: children’s illness experience, COVID-19, long-COVID in children, long-COVID kids, qualitative research

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Authors: Steven Walker

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This paper assesses recent data on the prevalence of poverty among children and young people diagnosed with mental health problems. The paper will demonstrate that the current hierarchy of risk factors for developing mental health problems needs adjusting to place poverty among the highest risk factors. Globally poverty is calculated to keep rising especially among less developed countries, and the post-Covid 19 economic recession in developed countries is set to rise. The experience of young people enduring Pandemic isolation is already being quantified and is expected to increase referrals for specialist intervention. Searches on several medical/psychological/social databases using keywords: poverty, children, mental illness were undertaken between 2018 and 2021. Worldwide, 700 million people still live in extreme poverty, half of whom are children. Children are physically and mentally disproportionately affected. Children who grow up impoverished lack the basic necessities they need to survive and thrive. 150 million children have been plunged into multidimensional poverty due to COVID-19. The poorest children are twice as likely to die in childhood than their wealthier peers. For those growing up in humanitarian crises such as Ukraine, the risks of deprivation and exclusion are magnified. In the world’s richest countries, one in seven children still live in poverty. Currently, one in four children in the European Union are at risk of falling into poverty. In Europe the impact of Brexit on the UK economy is predicted to reduce GDP by 5% in 2021 with a corresponding rise in poverty. According to the global charity Oxfam wealth inequality impacts levels of child abuse and affects women and girls worse and is a contributory factor in the risk of developing childhood mental illness. In the UK 2000 Foodbanks have opened since 2010, handing out 2 million food parcels annually, where there are currently 4 million children officially living in poverty. This research demonstrates that there is a strong association between families’ socio-economic circumstances and the chances that their children will experience mental illness. Evidence of this association is found repeatedly across developed countries. The paper will conclude by arguing that psychologists, psychiatrists, psychotherapists, social workers and CAMHS specialists need to place more importance on this critical socio-economic variable when assessing referred children and also advocate for political priorities in governments to reduce poverty and lower the risk of childhood mental illness.

Keywords: poverty, resilience, risk factor, socio economic, susceptibility

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Authors: Tsugunosuke Sakai, Haruya Tamaki, Ryuichi Yoshida, Ryohei Egusa, Etsuji Yamaguchi, Shigenori Inagaki, Fusako Kusunoki, Miki Namatame, Masanori Sugimoto, Hiroshi Mizoguchi

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We aim to develop a full-body interaction game that could let children cooperate and interact with other children in small groups. As the first step for our aim, the objective of the full-body interaction game developed in this study is to make interaction between children. The game requires two children to jump together with the same timing. We let children experience the game and answer the questionnaires. The children using several strategies to coordinate the timing of their jumps were observed. These included shouting time, watching each other, and jumping in a constant rhythm as if they were skipping rope. In this manner, we observed the children playing the game while cooperating with each other. The results of a questionnaire to evaluate the proposed interactive game indicate that the jumping game was a very enjoyable experience in which the participants could immerse themselves. Therefore, the game enabled children to experience cooperation with others by using body movements.

Keywords: children, cooperation, full-body interaction game, kinect sensor

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Authors: Maarja Karbus, Elsbet Lippmaa, Kadri Kööp, Mare Tupits

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Aim: The aim is to describe the experiences and needs of mothers of children with cancer in coping with the child's illness. Background: Cancer affects different life areas. Especially if it is a child, in this case the whole family is involved. Loved ones are mentally affected, there are limitations, and life changes need to be made to make the whole treatment regimen and recovery as comfortable as possible. Also, the whole process is expensive and time consuming. The research is part of a larger project that covers the experiences and needs of parents of children with chronic illness and coping strategies related to the child's illness. Design: Qualitative, empirical, descriptive research. Method: Semi-structured interviews were used to collect data and inductive content analysis was used to analyze the data. The interviews were conducted in the autumn of 2020, 5 respondents participated in the research. Results and Conclusions: The research revealed that the mothers' experiences of coping with a child's disease included health-related experiences, material aspects, changes in lifestyle, support systems and contact with professionals. Regarding the organizational and material aspects of life, the subjects presented experiences with economic problems, adaptation of changes in lifestyle, access to information and changes in the treatment process. With regard to health, the respondents identified experiences with the mother's physical and mental health and experiences with the health of an ill child. The experience of different support systems was related to the support of family, friends, acquaintances, various organizations and specialists. Experiences with specialist support included experiences with family relationships and positive and negatiive experiences with staff. The mothers' needs in dealing with the child's disease included the mother's emotional needs, the support of other family members, and the need for various support systems and services. The needs of coping with the child were the need for understanding, support, confidence, the need to be strong and courageous, the need to ignore one's own needs, and the need for personal time and rest. The needs of other family members included the needs of an ill child and the need to pay attention to other children in the family. The needs of different supporters and services were related to different helpers and different services.

Keywords: cancer, mother, coping, child, need, experience, illness

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Authors: Caroline Picton, Lorna Moxham, Christopher Patterson, Dana Perlman, Ellie Taylor, Renee Brighton

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The purpose of this study was to extrapolate the meaning for people living with a mental illness of their participation in a therapeutic recreation experience. The study’s participants engaged in a five-day adventure camp, known as Recovery Camp, alongside undergraduate health care students. An interpretive phenomenological approach was used as an exploratory method to interview 25 participants (n=25). Van Kaam’s structured analytical framework guided the analysis of the transcribed narratives. The findings provide insight into using therapeutic recreation to enhance personal mental health recovery. Recovery Camp was viewed by participants as having a transformational effect on forming positive social connectedness and improving their self-identity. Participants perceived the Recovery Camp experience as one that gave them a sense of purpose and increased their motivation to undertake further activities. The insights gained of the benefits of therapeutic recreation for people living with a mental illness can be used to promote purposeful community engagement.

Keywords: interpretive phenomenology, lived experience, mental illness, personal mental health recovery

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Authors: Stella Laletas, Andrea Reupert, Melinda Goodyear, Bradley Morgan

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Background: Many people with a mental illness have young children. Research has shown that early childhood is a particularly vulnerable time for children whose parents have a mental illness. Moreover, repeated research has demonstrated the effectiveness of a multiagency approach to family focused practice for improving parental functioning and preventing adverse outcomes in children whose parents have a mental illness, particularly in the early years of a child’s life. However, there is a paucity of professional development resources for professionals who work with families where a parent has a mental illness and has young children. Significance of the study: This study will make a contribution to addressing knowledge gaps around resource development and workforce needs for early childhood and mental health professionals working with young children where a parent has a mental illness. Objective: This presentation describes a newly developed resource, 'Pathways of Care', specifically designed for early childhood educators and mental health workers, alongside pilot evaluation data regarding its effectiveness. ‘Pathways of Care’ aims to promote collaborative practice and present early identification and referral processes for workers in this sector. The resource was developed by the Children of Parents with a Mental Illness (COPMI) National Initiative which is funded by the Australian Government. Method: Using a mixed method design, the effectiveness of the training resource is also presented. Fifteen workers completed the Family Focus Mental Health Practice Questionnaire pre and post using the resource, to measure confidence and practice change; semi-structured interviews were also conducted with eight of these same workers to further explore the utility of the resource. Findings: The findings indicated the resource was effective in increasing knowledge and confidence, particularly for new and/or inexperienced staff. Examples of how the resource was used in practice by various professions emerged from the interview data. Conclusions: Collaborative practice, early identification and intervention in early childhood can potentially play a key role in altering the life trajectory of children who are at risk. This information has important implications for workforce development and staff training in both the early childhood and mental health sectors. Implications for policy and future research are discussed.

Keywords: parents with mental ilnesses, early intervention, evaluation, preschool children

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Authors: Beata Patuszynska

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Children are largely absent from Polish social discourse, a fact which is mirrored in urban planning processes. Their absence creates a vicious circle – an unfriendly urban space discourages children from going outside on their own, meaning adults do not see a need to make spaces more friendly for a group, not present. The pandemic and lockdown, with their closed schools and temporary ban on unaccompanied minors on the streets, have only reinforced this. The project – co-writing with children a book concerning their first steps into urban independence - aims at empowering children, enabling them to find their voice when it comes to urban space. The foundation for the book was data collected during research and workshops with children from Warsaw primary schools, aged 7-10 - the age they begin independent travel in the city. The project was carried out with the participation and involvement of children at each creative step. Children were (1) models: the narrator is an 7-year-old boy getting ready for urban independence. He shares his experience as well as the experience of his school friends and his 10-year-old sister, who already travels on her own. Children were (2) teachers: the book is based on authentic children’s stories and experience, along with the author’s findings from research undertaken with children. The material was extended by observations and conclusions made during the pandemic. Children were (3) reviewers: a series of draft chapters from the book underwent review by children during workshops performed in a school. The process demonstrated that all children experience similar pleasures and worries when it comes to interaction with urban space. Furthermore, they also have similar needs that need satisfying. In my article, I will discuss; (1) the advantages of creating together with children; (2) my conclusions on how to work with children in participatory processes; (3) research results: perceptions of urban space by children age 7-10, when they begin their independent travel in the city; the barriers to and pleasures derived from independent urban travel; the influence of the pandemic on children’s feelings and their behaviour in urban spaces.

Keywords: children, urban space, co-creation, participation, human rights

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Authors: Elizabeth A. Montero

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The project contemplated in this study particularly aimed at enabling public school children of ages ten to twelve who belong to low and middle income families. The pupils were provided training on communication, work, computer and social skills. In this study, the researcher hypothesized that children given the opportunity to develop a skill through guidance and proper supervision will significantly learn, improve and develop a skill. Since children’s minds are highly absorbent like a sponge absorbing anything within its capacity to take, it is ideal and necessary that education should provide an environment that is rich offering an array of meaningful experiences. The context of this study is well balanced since it catered to the children’s communication, work, computer and social skills.

Keywords: Munting Kamay, Munting Gawa, children’s development training, UCU experience

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Authors: Ganetsou Evanthia, Koutsikos Emmanouil, Austin Anna Maria

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Information technology has long served the needs of individuals for learning and entertainment, but much less for children in sickness. The aim of the proposed online video game is to provide immersive learning opportunities as well as essential social and emotional scenarios for hospital-bound children with long-term illness. Online self-paced courses on chosen school subjects, including specialised software and multisensory assessments, aim at enhancing children’s academic achievement and sense of inclusion, while doctor minigames familiarise and educate young patients on their medical conditions. Online ethical dilemmas will offer children opportunities to contemplate on the importance of medical procedures and following assigned medication, often challenging for young patients; they will therefore reflect on their condition, reevaluate their perceptions about hospitalisation, and assume greater personal responsibility for their progress. Children’s emotional and psychosocial needs are addressed by engaging in social conventions, such as interactive, daily, collaborative mini games with other hospitalised peers, like virtual competitive sports games, weekly group psychodrama sessions, and online birthday parties or sleepovers. Social bonding is also fostered by having a virtual pet to interact with and take care of, as well as a virtual nurse to discuss and reflect on the mood of the day, engage in constructive dialogue and perspective taking, and offer reminders. Access to the platform will be available throughout the day depending on the patient’s health status. The program is designed to minimise escapism and feelings of exclusion, and can flexibly be adapted to offer post-treatment and a support online system at home.

Keywords: long-term illness, children, hospital, interactive games, cognitive, socioemotional development

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Authors: Nicole Brown

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This study considers the illness experience of fibromyalgia patients by using identity boxes. The results improve health care professionals' understanding of patient experiences. Additionally, the concept of the identity boxes may offer a practical solution for helping patients accept the diagnosis of fibromyalgia. Fibromyalgia research traditionally refers to pain experiences and relies on questionnaires, surveys, interviews and some narrative analysis. However, due to the variability in symptoms, symptom levels, and locations, these methods may not be best suited to provide an insight into the patient experience. On the other hand, lengthy interview processes are not easily accessible for sufferers of fibromyalgia. In addition to timelines and diary extracts, this study uses identity boxes as its main data collection method. Participants are asked to find items in response to specific questions and to arrange them in their box. The objects represent the patients' experiences holistically. Participants provide photographs of their identity box at each stage of the process and explain their chosen items. The photographs of the identity boxes and the patients' explanations of their objects and their boxes are subjected to interpretative phenomenological analysis. Despite the unique forms of the completed boxes, common experiences are described: the need for comfort, the role of spirituality and the impact of fibromyalgia on everyday life, that it plays a significant role but those patients are determined not to let it rule their lives. The work with the identity boxes has shown beneficial impact due to the reflective nature involved in the tasks. Further investigations will be needed to identify the long-term impact of identity work using such boxes.

Keywords: biographical disruption, fibromyalgia, illness experience, illness narrative

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Authors: Restuning Widiasih, Katherine Nelson, Joan Skinner

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Muslim husbands have significant roles in the family including their roles in women’s health and illness. However, studies that explore Muslim husbands’ participation in women’s health is limited. The objective of this study was to uncover Muslim husbands’ participation in women’ health and illness including cancer prevention and screening. A descriptive exploratory approach was used involving 20 Muslim women from urban and rural areas of West Java Province, Indonesia. Muslim women shared experience related to their husbands support and activities in women’s health and illness. The data from the interviews were analyzed using the Comparative Analysis for Interview (CAI). Women perceived that husbands fully supported their health by providing opportunities for activities, and reminding them about healthy food, their workloads, and family planning. Husbands actively involved when women faced health issues including sharing knowledge and experience, discussing any health problems, advising for medical check-ups, and accompanying them for treatments. The analysis also found that husbands were less active and offered less advice regarding prevention and early detection of cancer. This study highlights the significant involvement of Muslim husbands in women’s health and illness, yet a lack of support from husbands related to screening and cancer prevention. This condition could be a burden for Muslim women to participate in health programs related to cancer prevention and early detection. Health education programs to improve Muslim husbands’ understanding of women’s health is needed.

Keywords: descriptive exploratory study, Muslim husbands, Muslim women, women's health and illness

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Authors: Yuthapoom Thanakijborisut

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This paper studies consumption insurance against the chronic illness in Thailand. The study estimates the impact of household consumption in the chronic illness on consumption growth. Chronic illness is the health care costs of a person or a household’s decision in treatment for the long term; the causes and effects of the household’s ability for smooth consumption. The chronic illnesses are measured in health status when at least one member within the household faces the chronic illness. The data used is from the Household Social Economic Panel Survey conducted during 2007 and 2012. The survey collected data from approximately 6,000 households from every province, both inside and outside municipal areas in Thailand. The study estimates the change in household consumption by using an ordinary least squares (OLS) regression model. The result shows that the members within the household facing the chronic illness would reduce the consumption by around 4%. This case indicates that consumption insurance in Thailand is quite sufficient against chronic illness.

Keywords: consumption insurance, chronic illness, health care, Thailand

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Authors: Agnes Crisostomo, Alvin Joseph Mapoy

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This is a qualitative study which focuses on ten (10) children, with a mean age of 13.6, working in fireworks factories in Bocaue, Bulacan. The municipality of Bocaue was chosen since it is the center of trade for fireworks, and child laborers can easily penetrate in factories here. The researcher wanted to know what the possible negative effects are caused by working at an early age of a child in the physical, psychosocial, intellectual and emotional aspects of life. Results showed that social status of their parents and their lack of income forced the children to work for their family. Second, the child laborers still allot time for studying. They still do not give up in pursuing education even if they experience fatigue and illness which affect their physical development. Third, working has a great influence to the child’s life. Fourth, through socializing with others, they become more aware of life’s hardships. Usually, their co-workers are also their family members and friends; this is how they know the social status is their place, that due to poverty even the children should work for a living. Fifth, these child laborers are still hoping for a better future. Despite of their poor situation, they are still hoping that they can turn it upside down through education, perseverance and determination.

Keywords: child labor, emotional, intellectual, psychosocial

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Authors: Steven G. Sclan

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Background: Since December 2019, the world has been afflicted by the spread of the Severe Acute Respiratory Syndrome-Corona Virus-2 (SARS-CoV-2), which is responsible for the condition referred to as Covid-19. The illness has had a cataclysmic impact on the political, social, economic, and overall well-being of the population of the entire globe. While Covid-19 has had a substantial universal fatality impact, it may have an even greater effect on the socioeconomic, medical well-being, and healthcare planning for remaining societies. Significance: As these numbers illustrate, many more persons survive the infection than die from it, and many of those patients have noted ongoing, persistent symptoms after successfully enduring the acute phase of the illness. Recognition and understanding of these symptoms are crucial for developing and arranging efficacious models of care for all patients (whether or not having been hospitalized) surviving acute covid illness and plagued by post-acute symptoms. Furthermore, regarding Covid infection in children (< 18 y/o), although it may be that Covid “+” children are not major vectors of infective transmission, it now appears that many more children than initially thought are carrying the virus without accompanying obvious symptomatic expression. It seems reasonable to wonder whether viral effects occur in children – those children who are Covid “+” and now asymptomatic – and if, over time, they might also experience similar symptoms. An even more significant question is whether Covid “+” asymptomatic children might manifest increased multiple health problems as they grow – i.e., developmental complications (e.g., physical/medical, metabolic, neurobehavioral, etc.) – in comparison to children who had been consistently Covid “ - ” during the pandemic. Topics Addressed and Theoretical Importance: This review is important because of the description of both quantitative and qualitative methods for clinical and biomedical research. Topics reviewed will consider the importance of well-designed, comprehensive (i.e., quantitative and qualitative methods) longitudinal studies of Post Covid-19 symptoms in both adults and children. Also reviewed will be general characteristics of longitudinal studies and a presentation of a model for a proposed study. Also discussed will be the benefit of longitudinal studies for the development of efficacious interventions and for the establishment of cogent, practical, and efficacious community healthcare service planning for post-acute covid patients. Conclusion: Results of multi-dimensional, longitudinal studies will have important theoretical implications. These studies will help to improve our understanding of the pathophysiology of long COVID and will aid in the identification of potential targets for treatment. Such studies can also provide valuable insights into the long-term impact of COVID-19 on public health and socioeconomics.

Keywords: COVID-19, post-COVID-19, long COVID, longitudinal research, quantitative research, qualitative research

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Authors: Rushi Naaz, Diksha Suchdeva

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Background: Temperament is a very important aspect of functioning that needs to be understood in children of patients suffering from schizophrenia. The children of parents with mental disorder have substantially increased risk of psychiatric illness in them and may exhibit a range of problems from minor variations in temperament and adjustment to manifest psychiatric disorder. Method: A case control study was conducted to study the temperament characteristics and psychopathology in children of patients suffering from schizophrenia as compared to those of healthy controls. Both the groups were evaluated on Temperament Measurement Schedule and Childhood Psychopathology Measurement Schedule. Results: The results showed that children of patients suffering from schizophrenia were withdrawing, less adaptable, less sociable and had lower activity level than children of healthy parents. However, on the measure of psychopathology, no significant difference was found. Conclusion: Since temperament can be identified at an early age, children at risk for the disorder later on could be identified early enough for possible primary intervention.

Keywords: children, childhood psychopathology, parental psychopathology, psychiatric disorders, schizophrenia, temperament

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Authors: Wike Wike

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The aim of this study is to investigate the experience of mothers of autistic children in Indonesia in raising the children and obtaining services for them through the adequate of information. The study seeks to contribute to the knowledge emerging from the women as a mother of children with autism on health and disability area. There is silence in the Indonesian literature on this perspective, especially about the parents and/or mothers of autistic children that is the focus of this analysis. Therefore, in order to capture the points of view emerging from the mothers, a qualitative study design has been applied. The main data for this qualitative study was collected from interviews (semi-structured interview and focus group discussion) with the mothers of children with autism who are member of parenting group in autistic schools and rehabilitation centers in one of Indonesian regional cities. This study reveals that the mothers’ experience in raising a child who is diagnosed with autism is rooted in limited knowledge on autism, limited knowledge on availability of services and limited knowledge on service options. Compounding this is limited availability and accessibility of the services that are important to their child's development. An important contribution of this study is to show how tapping into the experience of mothers can provide much needed information to policy making and service planners and implementers that can improve the services for children with autism and their families.

Keywords: mothers, children with autism, disability services and policy, services

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Authors: K. Genise, S. Murthy

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Introductory Statement: The results of this retrospective chart review suggest the effects of bacterial colonization in critically ill children with viral bronchiolitis, currently unproven, are clinically insignificant. Background: Viral bronchiolitis is one of the most prevalent causes of illness requiring hospitalization among children worldwide and one of the most common reasons for admission to pediatric intensive care. It has been hypothesized that co-infection with bacteria results in more severe clinical outcomes. Conversely, the effects of bacterial colonization in critically ill patients with bronchiolitis are poorly defined. Current clinical management of colonized patients consists primarily of supportive therapies with the role of antibiotics remaining controversial. Methods: A retrospective review of all critically ill children admitted to the BC Children’s Hospital Pediatric Intensive Care Unit (PICU) from 2014-2017 with a diagnosis of bronchiolitis was performed. Routine testing in this time frame consisted of complete pathogen testing, including PCR for Streptococcus pneumoniae. Analyses were performed to determine the impact of bacterial colonization and antibiotic use on a primary outcome of PICU length-of-stay, with secondary outcomes of hospital length-of-stay and duration of ventilation. Results: There were 92 patients with complete pathogen testing performed during the assessed timeframe. A comparison between children with detected Streptococcus pneumoniae (n=22) and those without (n=70) revealed no significant (p=0.20) differences in severity of illness on presentation as per Pediatric Risk of Mortality III scores (mean=3.0). Patients colonized with S. pneumoniae had significantly shorter PICU stays (p=0.002), hospital stays (p=0.0001) and duration of non-invasive ventilation (p=0.002). Multivariate analyses revealed that these effects on length of PICU stay and duration of ventilation do not persist after controlling for antibiotic use, presence of radiographic consolidation, age, and severity of illness (p=0.15, p=0.32). The relationship between colonization and duration of hospital stay persists after controlling for these variables (p=0.008). Conclusions: Children with viral bronchiolitis colonized with S. pneumoniae do not appear to have significantly different PICU length-of-stays or duration of ventilation compared to children who are not colonized. Colonized children appear to have shorter hospital stays. The results of this study suggest bacterial colonization is not associated with increased severity of presenting illness or negative clinical outcomes.

Keywords: bronchiolitis, colonization, critical care, pediatrics, pneumococcal, infection

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Authors: Denise F. Brown

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This proposal provides an explanation of the content for a Special Topics Course to be offered Spring of 2022. The course will be titled, Creative means to address mental health in the African American Community: Arts, Advocacy, and Awareness. Research shows that African Americans are less likely to seek treatment for mental illnesses. The stigma around mental illness influences negative ideas about having psychological problems within the African American community. Assessments of how African Americans perceive mental illness will also be provided. Current research suggests that understanding mental health is just as important as understanding mental illness. The distinguishment between mental illness and mental health provides a way to not negatively point out mental illness but to better understand that psychological and emotional well-being can be achieved whether a mental illness is present or not. The course will consist of defining mental health and mental illness and then what it means to utilize creative means to become a mental health advocate within the African American community.

Keywords: arts, advocacy, black mental health, mental illness

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Authors: Enkelejda Shkurti, Diamant Shtiza

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Background: Health-related quality of life (HRQoL) is a significant consequence in health care. The objective of our study was to recognize features related to lower HRQoL scores in children with anorectal malformation (ARM) and Hirschsprung disease (HD). Methods: Children younger than 18 years, with HD or ARM, that were assessed at our private clinic in Tirana, Albania, from December 2018 to October 2019, were acknowledged. The outcomes of broad questionnaires concerning diagnosis, symptoms, and preceding health/surgical history and authenticated tools to measure urinary status, stooling grade, and HRQoL were appraised. Results: In patients aged 0-6 years, vomiting and abdominal enlargement were allied with a substantial decrease in total HRQoL scores. In children > 6 years of age, vomiting, abdominal swelling, and abdominal discomfort were also linked to a considerably lower HRQoL. The main indicator of lower HRQoL scores on regression tree analysis in all age clusters was the occurrence of psychosomatic, behavioral, or progressive comorbidity. Conclusion: Children with both HD or ARM that have a psychosomatic, behavioral, or growing problem experience considerably lower HRQoL than patients deprived of such problems, proposing that establishment of behavioral/growing sustenance as part of the care of these patients may have a considerable influence on their HRQoL.

Keywords: anorectal malformation, Hirsch Sprung disease, quality of life, Albania

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Authors: Alicia Curtin, Kathy Hall

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This paper explores research and practice shared on a masters University module entitled Children's Literature as Pedagogy. Issues explored include the meaning of childhood and literature; the definition of what counts as text, textual and literacy practice for children and adolescents. A sociocultural framework is used to define literacy practice from this perspective and student voice and experience remains central. Lessons from classroom experience and the use of innovative, multi modal and non traditional texts and pedagogical approaches are offered as examples of innovative and inclusive pedagogy in the field of literacy practice.

Keywords: non traditional, pedagogy, practice, sociocultural

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Authors: S. Aberkane, N. Djabali, S. Fafi, A. Baghezza

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Chronic illnesses affect many Algerians. It is possible to investigate the impact of illness representations and coping on quality of life and whether illness representations are indirectly associated with quality of life through their influence on coping. This study aims at investigating the relationship between illness perception, coping strategies and quality of life with chronic illness. Illness perceptions are indirectly associated with the quality of life through their influence on coping mediation. A sample of 316 participants with chronic illness living in the region of Batna, Algeria, has been adopted in this study. A correlation statistical analysis is used to determine the relationship between illness perception, coping strategies, and quality of life. Multiple regression analysis was employed to highlight the predictive ability of the dimensions of illness perception and coping strategies on the dependent variables of quality of life, where mediation analysis is considered in the exploration of the indirect effect significance of the mediator. This study provides insights about the relationship between illness perception, coping strategies and quality of life in the considered sample (r = 0.39, p < 0.01). Therefore, it proves that there is an effect of illness identity perception, external and medical attributions related to emotional role, physical functioning, and mental health perceived, and these were fully mediated by the asking for assistance (c’= 0.04, p < 0.05), the guarding (c’= 0.00, p < 0.05), and the task persistence strategy (c’= 0.05, p < 0.05). The findings imply partial support for the common-sense model of illness representations in a chronic illness population. Directions for future research are highlighted, as well as implications for psychotherapeutic interventions which target unhelpful beliefs and maladaptive coping strategies (e.g., cognitive behavioral therapy).

Keywords: chronic illness, coping, illness perception, quality of life, self- regulation model

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Authors: Soowon Park, Min-Ji Kim, Jun-Young Lee

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Motivation: The stigma of mental illness has been studied in many disciplines, including social psychology, counseling psychology, sociology, psychiatry, public health care, and related areas, because individuals labeled as ‘mentally ill’ are often deprived of their rights and their life opportunities. To understand the factors that deepen the stigma of mental illness, it is important to understand the influencing factors of the stigma. Problem statement: Depression is a common disorder in adults, but the incidence of help-seeking is low. Researchers have believed that this poor help-seeking behavior is related to the stigma of mental illness, which results from low mental health literacy. However, it is uncertain that increasing mental health literacy decreases mental health stigmatization. Furthermore, even though decreasing stigmatization is important, the stigma of mental illness is still a stable and long-lasting phenomenon. Thus, factors other than knowledge about mental disorders have the power to maintain the stigma. Investigating the influencing factors that facilitate the stigma of psychiatric disease could help lower the social stigmatization. Approach: Face-to-face interviews were conducted with a multi-clustering sample. A total of 700 Korean participants (38% male), ranging in age from 18 to 78 (M(SD)age= 48.5(15.7)) answered demographical questions, Korean version of Link’s Perceived Devaluation and Discrimination (PDD) scale for the assessment of social stigmatization against depression, and the Korean version of the WHO-Composite International Diagnostic Interview for the assessment of mental disorders. Multiple-regression was conducted to find the predicting factors of social stigmatization against depression. Ages, sex, years of education, income, living location, and experience of mental illness were used as the predictors. Results: Predictors accounted for 14% of the variance in the stigma of depressive disorders (F(6, 693) = 20.27, p < .001). Among those, only age, years of education, and experience of mental illness significantly predicted social stigmatization against depression. The standardized regression coefficient of age had a negative association with stigmatization (β = -.20, p < .001), but years of education (β = .20, p < .001) and experience of mental illness (β = .08, p < .05) positively predicted depression stigmatization. Conclusions: The present study clearly demonstrates the association between personal factors and depressive disorder stigmatization. Younger age, more education, and self-stigma appeared to increase the stigmatization. Young, highly educated, and mentally ill people tend to reject patients with depressive disorder as friends, teachers, or babysitters; they also tend to think that those patients have lower intelligence and abilities. These results suggest the possibility that people from a high social class, or highly educated people, who have the power to make decisions, help maintain the social stigma against mental illness patients. To increase the awareness that people from high social classes have more stigmatization against depressive disorders will help decrease the biased attitudes against mentally ill patients.

Keywords: depressive disorder stigmatization, age, education, self-stigma

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Authors: Patricia Wahl, Dirk Bruland, Albert Lenz

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Children of mentally ill parents are a large high risk group for mental disorders which is hardly reached by preventive programs. The children inherit a heightened risk to develop a mental disorder themselves during their lifetime, but they and their parents are often rejecting to seek help. To elicit the factors determining this prevention dilemma, an explorative qualitative interview study is conducted in 25 families with mentally ill parents and yet unaffected children. Inclusion criteria are the children’s age (7 to 14 years old) and that these children live together with the affected parent. With regard to the concept of Mental Health Literacy the following research questions are leading the Qualitative Content Analysis: What are the needs of families with mentally ill parents? How can their help-seeking behaviour be described? What are their subjective illness theories? And which influences do gender, ethnicity and socio-economic status have on needs, help-seeking and illness theories? Mental Health Literacy relates to the knowledge and attitudes towards mental disorders influencing the recognition, management or prevention of these disorders. The concept seems to be an interesting starting point for our analysis with the aim to understand antecedences and processes in the families more deeply. Results of an extensive literature review serve as deductive framework for our analysis, first findings from the interviews will be available up to the time of the conference and can be presented. They hopefully will give inside in the families’ living environment and help to adapt/develop interventions and in the long term reduce health inequalities. The project at hand is part of the Health Literacy in Childhood and Adolescence (HLCA) Research Consortium financed by the German Federal Ministry of Education and Research (BMBF).

Keywords: children of mentally ill parents, help-seeking behaviour, mental health literacy, prevention dilemma

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Authors: Sunanta Klibthong

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In view of the Thailand government policy creating increasing awareness of opportunity for children with special needs, the number of children with disabilities enrolled in kindergartens in Thailand has increased. This study explores early childhood teachers’ experiences and concerns of teaching children with disabilities in inclusive classrooms. The population of the study was private early childhood teachers who teach in inclusive classrooms in Thailand. Quantitative data obtained through a questionnaire were supplemented by early childhood teachers’ interviews to identify key experiences and concerns of the teachers when teaching children with and without disabilities in the same classrooms. The results of this study indicated that many teachers face challenges including lack of professional development opportunities, difficulty identifying the needs of all children and how to use effective strategies to support inclusive practices in their classrooms. Teachers also expressed concern about parents’ lack of willingness to accept children without disabilities studying together with those with disabilities in the same classrooms. Findings from this study can inform program support for parents and professional support needs of teachers in the provision of high-quality inclusive programs for all students.

Keywords: the concern, early childhood, experience, inclusive education, Thailand

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Authors: Dena A. Hussain

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The objective of this project is to design an Information and Communication Technologies (ICT) tool based on a standardized platform to assist the work-integrated learning process of caretakers of disabled children. The tool should assist the intercommunication between caretakers and improve the learning process through knowledge bridging between all involved caretakers. Some children are born with disabilities while others have special needs after an illness or accident. Special needs children often need help in their learning process and require tools and services in a different way. In some cases the child has multiple disabilities that affect several capabilities in different ways. These needs are to be transformed into different learning techniques that the staff or personal (called caretakers in this project) caring for the child needs to learn and adapt. The caretakers involved are also required to learn new learning or training techniques and utilities specialized for the child’s needs. In many cases the number of people caring for the child’s development is rather large; the parents, specialist pedagogues, teachers, therapists, psychologists, personal assistants, etc. Each group of specialists has different objectives and in some cases the merge between theses specifications is very unique. This makes the synchronization between different caretakers difficult, resulting often in low level cooperation. By better intercommunication between professions both the child’s development could be improved but also the caretakers’ methods and knowledge of each other’s work processes and their own profession. This introduces a unique work integrated learning environment for all personnel involve, merging learning and knowledge in the work environment and at the same time assist the children’s development process. Creating an iterative process generates a unique learning experience for all involved. Using a work integrated platform will help encourage and support the process of all the teams involved in the process.We believe that working with children who have special needs is a continues learning/working process that is always integrated to achieve one main goal, which is to make a better future for all children.

Keywords: information and communication technologies (ICT), work integrated learning (WIL), sustainable learning, special needs children

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Authors: Maha Atout, Pippa Hemingway, Jane Seymour

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A preliminary systematic review shows that health professionals experience a tension when communicating with the parents and family members of children with life-threatening and life-limiting conditions. On the one hand, they want to promote open and honest communication, while on the other, they are apprehensive about fostering an unrealistic sense of hope. Defining the boundaries between information that might offer reasonable hope versus that which results in false reassurance is challenging. Some healthcare providers worry that instilling a false sense of hope could motivate parents to seek continued aggressive treatment for their child, which in turn might cause the patient further unnecessary suffering. To date, there has been a lack of research in the Middle East regarding how healthcare providers do or should communicate bad news; in particular, the issue of hope in the field of paediatric palliative care has not been researched thoroughly. This study aims to explore, from the perspective of patients’ mothers, physicians, and nurses, the experience of communicating and receiving bad news in the care of children with palliative care needs. Data were collected using a collective qualitative case study approach across three paediatric units in a Jordanian hospital. Two data collection methods were employed: participant observation and semi-structured interviews. The overall number of cases was 15, with a total of 56 interviews with mothers (n=24), physicians (n=12), and nurses (n=20) completed, as well as 197 observational hours logged. The findings demonstrate that mothers wanted their doctors to provide them with hopeful information about the future progression of their child’s illness. Although some mothers asked their doctors to provide them with honest information regarding the condition of their child, they still considered a sense of hope to be essential for coping with caring for their child. According to mothers, hope was critical to treatment as it helped them to stay committed to the treatment and protected them to some extent from the extreme emotional suffering that would occur if they lost hope. The health professionals agreed with the mothers on the importance of hope, so long as it was congruent with the stage and severity of each patient’s disease. The findings of this study conclude that while parents typically insist on knowing all relevant information when their child is diagnosed with a severe illness, they considered hope to be an essential part of life, and they found it very difficult to handle suffering without any glimmer of it. This study finds that using negative terms has extremely adverse effects on the parents’ emotions. Hence, although the mothers asked the doctors to be as honest as they could, they still wanted the physicians to provide them with a positive message by communicating this information in a sensitive manner including hope.

Keywords: health professionals, children, communication, hope, information, mothers, palliative care

Procedia PDF Downloads 191