Lived Experiences Of Children Research Articles

Living With Cancer: Child-Parent Dyads' Perspectives and Experiences From a Private Tertiary Care Hospital in Pakistan.

The life experiences of children with cancer and their parents as individuals have been well documented in literature. However, little is known about their experiences as child-parent dyads in Pakistan regarding these children's quality of life. Thus, the study was conducted in the context of the family-centric society of Pakistan. In-depth interviews were conducted with 28 participants (14 child-parent dyads), comprising 9 female and 5 male children receiving cancer treatment and 8 mothers and 6 fathers (primary caregivers). All the participants were Muslims and hailed from diverse ethnic backgrounds, and most belonged to middle socioeconomic backgrounds. Thematic analysis was performed using Braun and Clarke's (2006) framework, which revealed four themes: (1) Stress, Fears, and Optimism; (2) Reactions to Restrictions; (3) Adaptation and Coping; and (4) Support Structure and Mechanisms. The findings indicated that children's and parents' daily lives were affected in various ways during the children's cancer journey. They faced several challenges which impacted their well-being. Particularly, the children considered their symptoms as restrictions in the way of carrying out their routine lives. However, children and parents also elaborated on using different coping strategies, such as play, reminiscing the past, incorporating religious practices into their daily routines, and keeping a family-centred approach towards the child's care. The parents also recommended that cancer-specialised services and support groups should be accessible. Conclusively, these findings are useful for healthcare providers in giving family-centred care to afflicted families and devising innovative interventions that address the needs of children with cancer and improve their quality of life.

Centring children's lived experiences in understanding the importance of play in hospitals.

Children have a right to participate in matters affecting their lives. With increasing regularity, children's perspectives are being sought regarding their health and health care experiences. Though there is evidence that children find play to be one of the 'best' aspects of hospitalisation, studies rarely focus on children's perspectives on play in hospital. This qualitative study explored children's lived experiences of play during hospitalisation. Over five months, ethnographic observations were conducted on a paediatric oncology ward as well as interviews with 16 children ages 3-13 years. Using interpretative phenomenological analysis, children's expressions and experiences illuminated three key points: safety and comfort are integral to children feeling able to play in hospital; the value and efficacy of play is decided by children; and that play is a way for patients to be (and be treated as) children first. Hospitals can only be child-friendly if children find them friendly. Listening to and integrating children's perspectives in the discourse around the importance of play in hospital is essential for respecting children's rights and delivering person-centred paediatric healthcare.

Prenatal Exposures, Diagnostic Outcomes, and Life Experiences of Children and Youths with Fetal Alcohol Spectrum Disorder.

Children and youths diagnosed with FASD may experience a range of adverse health and social outcomes. This cross-sectional study investigated the characteristics and outcomes of children and youths diagnosed with FASD between 2015 and 2018 at the Sunny Hill Centre in British Columbia, Canada and examined the relationships between prenatal substance exposures, FASD diagnostic categories, and adverse health and social outcomes. Patient chart data were obtained for 1187 children and youths diagnosed with FASD and analyzed. The patients (mean age: 9.7 years; range: 2-19) had up to 6 physical and 11 mental health disorders. Prenatal exposure to other substances (in addition to alcohol) significantly increased the severity of FASD diagnosis (OR: 1.18): the odds of FASD with sentinel facial features (SFF) were 41% higher with prenatal cigarette/nicotine/tobacco exposure; 75% higher with exposure to cocaine/crack; and two times higher with exposure to opioids. Maternal mental health issues and poor nutrition also increase the severity of FASD diagnosis (60% and 6%, respectively). Prenatal exposure to other substances in addition to alcohol significantly predicts involvement in the child welfare system (OR: 1.52) and current substance use when adjusted for age (aOR: 1.51). Diagnosis of FASD with SFF is associated with an increased number of physical (R2 = 0.071, F (3,1183) = 30.51, p = 0.000) and mental health comorbidities (R2 = 0.023, F (3,1185) = 9.51, p = 0.000) as compared to FASD without SFF adjusted for age and the number of prenatal substances. Screening of pregnant women for alcohol and other substance use, mental health status, and nutrition is extremely important.

Children’s Subjective Well-Being During the Global Health Crisis of Covid-19: A Croos-Narional Comparison

The COVID-19 pandemic was the worst global health disaster of this century. Although children were not at a particularly significant risk of morbidity, let alone mortality, the pandemic posed an acute threat to their well-being. Despite the extensive literature on the impact of COVID-19 on children, studies rarely focused on their subjective perspectives, quality of life and subjective well-being (SWB), but rather on their mental health problems. Moreover, most studies included only a single country. The current quantitative study addressed these gaps by empirically exploring children's lived experiences to assess their SWB, the quality of their relationships with significant others and its effects on SWB, as well as their fears and worries during the pandemic. It was based on a sample of 23,803 children aged 7–15 from twenty countries. The findings indicated a decrease in children’s SWB during the pandemic. It was also found that children’s SWB was predicted by their relationships with significant others. Fears and worries were found to be correlated with children’s SWB very weakly. Finally, some cross-national differences were found in children’s SWB and in the effects of their relationships on their SWB. Nevertheless, only a small share of the variance in children’s SWB could be attributed to differences across countries. These results are discussed in terms of implications for research and policy: although COVID-19 is in many respects already behind us, we can learn much from what happened during that time to better cope with future global or national crises.

Temporalities in asylum childhoods: time politics and children’s rights in Sweden’s asylum reception and resettlement

ABSTRACT The study of time and temporality can provide a critical understanding of the migration process and be analysed to understand temporal governance and migrants' lived temporal experiences. This article draws on Cwerner's understanding of time politics and Griffiths' theorisation of temporal tensions to consider how temporal governance and temporal regulations affect children's lived temporalities. The article draws on ethnographic fieldwork in the tradition of the sociology of childhood to explore children's lived experiences of time and temporalities in the Swedish asylum reception system and the resettlement process. The article shows how the children's lived experiences entailed different dimensions of time and temporalities and considers how time politics and temporal tensions affect childhood conditions. The article particularly explores children's lived experiences of the temporalities embedded in migration politics concerning school and housing. The article argues that children's lived experiences of time and temporality may contribute to an understanding of how the time politics embedded in the asylum reception system and the resettlement affects the conditions of asylum childhoods and in turn has an impact on children's rights.

Passing the torch or breaking a cycle of intergenerational transmission of child labour: Reflections from the lived experiences of children

Child labour is theorized to be influenced by social and cultural norms that legitimise child labour activities. While research has documented the nature of child labour, in terms of what activities children are engaged in as well as the impact it could have on children’s development, not much is known about the pathways that lead to the normalisation of child labour. In this narrative qualitative study, we explored the pathways to normalising child labour among children in Ghana. The experiences of 18 children interviewed leads to an overall consideration of a case of passing the torch or breaking the cycle of intergenerational transmission of child labour. The study reported, continuing the family business, contributing to family income and reasonable earnings, as part of the debate for passing the torch. However, there is also room to break the potential for the intergenerational transmission of child labour which requires efforts from relevant stakeholders such as teachers, parents, and policy makers. With an understanding of how child labour may be legitimised, we can now move to develop programmes and interventions to de-legitimise child labour norms and contribute to positive outcomes for children.

Heterogeneity in the household experiences of young children in head start and associations with absenteeism

Understanding who is absent and what levers may reduce absenteeism is important for promoting not only children's attendance at school but also their learning and development across the school year. The absenteeism literature has primarily focused on socioeconomic status as a key predictor of absenteeism, which ignores the heterogeneity in the lived experiences of children from low-income households that are relevant for their absenteeism. Within a nationally representative sample of children enrolled in Head Start (N = 2,439), this study used latent profile analysis to understand whether and how patterns of household factors predicted children's absenteeism, as well as for whom two school-home connection factors may be more versus less salient levers for reducing absenteeism. Five household profiles emerged in this sample of children enrolled in Head Start. These combinations meaningfully predicted absenteeism above and beyond household income alone. Moreover, parents’ satisfaction with Head Start and programs’ provision of family support services were negatively associated with children's absenteeism, and these associations did not vary by profile. These findings highlight the importance of examining the heterogeneity in the types and combinations of household characteristics children may experience and point to school-home connections as an important focus area for programs.

Pakistani children's lived experiences of relationships in the context of child protection services in Norway: An interpretative phenomenological analysis

AbstractThis paper examines how children from immigrant background experience and negotiate power relations with family and social workers in the context of child protection services (CPS) in Norway. Using the interpretative phenomenological analysis (IPA) methodology, 11 children from Pakistani background were interviewed about their lived experiences with CPS. Analysis of the data highlights that children have to negotiate and navigate generational and gendered power relations both within the families and the CPS to exercise their agency. The analysis contributes to a limited research field focusing on immigrant children's multidimensional lived realities in the context of CPS, where children's voices are largely missing.

‘If you wanna have an easy life in secure, you have to bite your tongue’: Children’s narratives of power, voice and resistance in the children & young people secure estate

Locking up and detaining children and young people is and should be a human rights issue per se (Aymer et al., 1991). The United Nations Convention on the Rights of the Child provides that ‘no child shall be deprived of his or her liberty unlawfully…the restriction of liberty shall be used only as a measure of last resort and for the shortest appropriate period of time’ (United Nations General Assembly, 1989). It follows on to state that legal safeguards should be put in place to protect children’s human rights in settings where their rights and liberties are restricted. Despite this there is overwhelming evidence that in the Children and Young People Secure Estate (CYPSE) in the United Kingdom, children’s rights are inconsistently and excessively restricted, suggesting insufficient protection of their human rights (Goldson, 2006). Although the CYPSE is a highly restrictive setting in which children and young people are deprived of their rights and liberties for welfare or criminal justice reasons, there has been very little focus on power, voice, participation and human rights within these settings. In this article the authors outline the narratives of nine children and young people detained in the CYPSE through semi structured narrative interviews. Analysis of the interviews produced themes around experiences of powerlessness, control and restriction, voice & participation and resistance. This paper presents a detailed focus on the narratives around voice and resistance. The authors offer critical insights into how the lived experiences of children and young people in these settings strengthens the need for practice and policy to be informed by children’s rights, power and participation. Implications for how clinical psychology is enacted in these settings is also explored and interrogated, with a deconstruction of the role of a Clinical Psychologist.

The developing of executive function skills through culturally organized autonomy and helping

AbstractThe study of Executive Function skills, like most research in the developmental sciences, has been heavily focused on the experiences of children from Western, industrialized, highly schooled and middle‐class communities, often ignoring the experiences of the majority of children in the world. When research does include diverse populations, the approach is often from a deficit perspective, looking for ways to “fix” these children's lack of Executive Function skills. In this commentary, I argue for a contextual definition of Executive Function skills to reflect children's lived experiences, including the daily experiences of Indigenous children. I provide examples to illustrate how cultural values such as respect for children's autonomy and being acomedida/o can support the development of Executive Function skills. I then propose how the field of executive function research can move forward by (1) recognizing the broader ways in which children's daily activities can contribute to their Executive Function skills and (2) creating culturally relevant methods to measure Executive Function skills.

Learning-skill stories completion: A study on the development of 3–6-year-old children's narratives

The development of children's narrative language is an essential part of their language development, which has a unique value to children's future learning and growth. Many research studies focus on children's narrative ability, but few focus on the completion of Chinese children's stories. In this study, 191 Chinese children aged 3–6 years old in the Shanghai area were selected to collect a story corpus by using the international and general completion pictures of learning stories, supplemented with the method of corpus study to explore the characteristics of children's narrative language development in the learning-skill stories. The study found that the development of vocabulary, syntax, and other aspects of 3–6-year-old children showed an apparent upward trend. The variety of words, the types, and the frequency of nouns and adjectives increased with age. Regarding the perspective of syntactic analysis, the critical stage in the development of syntactic length was about 5 years old. The narrative situation of the learning-skill stories could help children to show a better narrative level. At the age of 3–6, the story structure of children's learning-skill stories gradually became complete and three-dimensional with age, and the richness of children's life experiences was an essential factor in promoting the integrity of the story structure. In the Chinese context, reactive sequences and abbreviated episodes were the main types of story structure in children's narration. The narratives of children's learning-skill stories were influenced by Chinese culture.

The experience of living with congenital heart disease from the perspective of the affected child or adolescent and its family: a systematic qualitative review

Abstract Funding Acknowledgements Type of funding sources: None. Introduction Congenital heart disease is one of the most prevalent congenital disabilities and significantly affects the lives of children and adolescents with congenital heart disease and their families. They tend to experience psychological, behavioural and relational comorbidities, leading to many complications and maladaptive behaviours. However, no literature review has been identified that addresses the whole family perspective. Objective To describe the experience of living with congenital heart disease from the perspective of the affected child or adolescent and their family. Methods A systematic qualitative review was conducted in PubMed, CINAHL, PsycINFO and Scopus databases between May and July 2022. The review protocol has been registered prospectively in PROSPERO. The key terms used were "experiences", "congenital heart disease'', "family", and "infants" with their respective synonyms, identified from MeSH terms, the thesaurus and the literature. The methodological quality of the studies was assessed. The Critical Appraisal Skills Programme questionnaire was used to assess qualitative studies. The Joanna Briggs Institute tool was utilised to evaluate literature reviews. Subsequently, two researchers jointly performed a qualitative content analysis of the selected articles. Results Ten studies were identified, and their methodological quality was generally good. None of the studies included in the same investigation the experience of more than one of the populations described (children or adolescents, siblings or parents). The sample sizes of the studies varied between 2 and 30 participants, and some did not report the sample size. The analysis permitted the child or adolescent and their family's experience to be grouped into four main themes: 1) Experiencing the impact of the initial diagnosis, 2) Living a "roller coaster" of emotions, 3) Coping with the day-to-day burden of the disease, 4) Finding sources of strength and opportunities. Conclusions The potential impact of a diagnosis of congenital heart disease on the life experience of children, adolescents, and their families has been evidenced. However, no studies have explored the family experience as a whole. It would be necessary to have more information about the family unit experience. Although healthcare disciplines conceptually recognize whole-family care as the focus of their practice, this idea remains a clinical ideal in most cases. Therefore, a paradigm shift in health care is necessary, from a model of attention exclusively focused on the patient to one in which the family is incorporated into the care process.

Life Experiences of Children with Chronic Uveitis Disease and their Families in Regard to the Disease and Treatment Process

Bu araştırmanın amacı, kronik üveit hastalığı olan çocuklar ve ailelerinin hastalık tanısı, tedavi süreci ve yaşadıkları sorunlar hakkında anlatılarını incelemektir. Nitel yöntemin kullanıldığı bu araştırmanın çalışma grubu, 13 çocuk, 20 aile üyesi ve 13 sağlık profesyonelinden oluşmaktadır. Veriler her üç katılımcı grubuyla yapılan derinlemesine görüşmelerden elde edilmiştir. Verilerin çözümlenmesinde, Maxqda nitel veri analiz programı, teknik olarak da içerik ve tematik analiz tekniği kullanılmıştır. Bulgularda, çocukların eğitimlerinin aksadığı, fiziksel ve psiko-sosyal alanlarda sorunlar yaşadıkları, bir bütün olarak çocuk ve ailesinin iyilik halinin ve yaşam kalitesinin olumsuz etkilendiği öne çıkmıştır. Aile üyelerinin, çocuklarının görme yetisini kaybetme kaygısını yaşadıkları, psikososyal ve ekonomik olarak tükendikleri, bakım ve tedavi olanaklarına erişim, tedaviyi uygulama, toplumsal yaşamdan izole olma alanlarında sorunlar yaşadıkları tespit edilmiştir. Aile üyelerinin tüm bu sorunlarla baş etme stratejilerinde başta kadere sığınma, yaşananları imtihan olarak değerlendirme olmak üzere, sosyoeokonomik seviye, hasta yakınları arasında deneyim paylaşma, aynı gemide olma duygusu ön plana çıkmıştır. Sonuç olarak bir ailede kronik hastalığı olan bir bireyin olması, tüm aile sisteminin, rollerin, dengelerin değişmesine, sosyal ve ekonomik yaşamın derinden etkilenmesine, yani aile yapısının ve sosyal ilişkilerin yeniden yapılanmasına neden olmaktadır.

Children's lived experience and perceptions of community members' influence on their schooling: a study in Uganda.

Global and national initiatives have successfully increased access to public education in low- and middle-income countries. However, many students in rural regions in these countries have high rates of absenteeism and drop-out, and low levels of academic engagement. Together, these significantly limit children's academic performance and achievement. One strategy that addresses these barriers seeks to engage members of the wider local community in schools. Most previous research focuses on adults' perspectives even though the potential benefit of community engagement is greatest when learners perceive it to be positive. Past research has also focused on community members structured engagement in activities within schools. This research provides a wider exploration of children's lived experience and perceptions concerning community members' influence on their schooling and learning. The aim was to gain a rich picture of how primary school students in rural Uganda perceive that community members' behavior helps or hinders their education. Qualitative data from students 10 to 13 years of age were collected through individual interviews that used the draw-and-talk technique (n = 20) and four focus group discussions. Seven broad categories of community members' actions were perceived to be positive (conflict resolution; supporting students' physical well-being; encouraging learning and positive behavior; reducing truancy; providing food and financial support; collective community work; and political representation). Four categories of community members' actions were perceived to have a negative influence (creating barriers to attending school; noise and other distractions; insecurity; and theft and vandalism). We conclude that carefully structured community involvement in schooling may improve the emotional and material support that facilitates students' continued school attendance and their motivation for learning. However, we also identify some limits on the role that local communities may be able to play in overcoming the challenges facing education in low- and middle-income countries.

The effects of small class sizes on students' academic achievement, socioemotional development and well-being in special education: A systematic review.

The effects of small class sizes on students' academic achievement, socioemotional development and well-being in special education: A systematic review.

"It felt like hitting rock bottom": A qualitative exploration of the mental health impacts of immigration enforcement and discrimination on US-citizen, Mexican children.

Latino immigrant families in the United States were disproportionately affected by intensified interior immigration enforcement under the Trump administration. US-citizen children are victimized by policies targeting their immigrant parents; research is sparse regarding how these polices affect children who experience parental deportation and children who are at risk for parental deportation. Additionally, anti-immigrant rhetoric can result in increased discrimination that also threatens children's psychological health. This qualitative study (N = 22) explores children's lived experiences of discrimination, parental deportation or threat of parental deportation, and perceived impacts on mental health. Interviews conducted from 2019 to 2020 revealed that children who are directly affected by or at risk for parental deportation experience detrimental impacts to their psychological well-being. Children experience discrimination as Latinos and children of immigrants, which is also detrimental to their mental/emotional health. Incorporating children's perspectives is critical to informing public health interventions. Findings demonstrate the need for family-friendly immigration reform.

Developing Imagination and Creativity in a Music and Arts-Based Program

This article explores how imagination and creativity are experienced and manifested in the lives of Hispanic (Mexican American) elementary-age children living in an underserved community as they participated in a Music and Arts-Based Program (MABP). Examples from students' narratives, collected by the first author for her dissertation study, aim to help understand the creative and imaginative expressions through the children's lived experiences. This data serves as the basis for this article. Analysis of the students' narratives, conducted by the authors, reveals important connections between art and spirituality. We contend that students' creativity, imagination, and selfawareness are evolving as children are guided through music and visual art experiences. In other words, as children take part in music instruction combined with practicing varying artistic elements, their sense of creativity and imagination are brought forth giving rise to a selfawareness of what they can feel, achieve and discover as they are exposed to the arts. Art is interpreted as a medium in which children can also experience moments of spirituality when adults serve as mediators for student learning. This study affirms that collaborative efforts among civic organizations are critical in developing creativity, imagination in children living in underserved communities.

Children's Perceptions of the Ontario Student Nutrition Program (OSNP) in Southwestern Ontario, Canada.

Purpose: This study aimed to explore children's lived experiences with the Ontario Student Nutrition Program (OSNP), a free, school-based snack program implemented in elementary schools in Southwestern, Ontario, Canada, to gain insights into future school food programs (SFP).Methods: Focus group discussions (n=17) were conducted with 105 children in Grades 5 to 8 in seven elementary schools. Focus groups were audio-recorded, transcribed, and coded for themes using inductive content analysis.Results: Overall, children appreciated the OSNP and felt that it filled a need in students. Children also reported a willingness to try novel food items. For future SFPs, participants recommended that input be sought from children to ensure food preferences were considered. Children also discussed wanting more appealing food offerings that may include some choice. Finally, children also mentioned wanting a fair and equitable distribution of food in classrooms.Conclusions: Children appreciated the OSNP and reported benefits to themselves and their peers. They also provided some valuable recommendations for future SFPs. If a nationally funded SFP is to be considered in Canada, children expressed the need to make the program equitable, while still allowing schools the flexibility to meet their unique needs and preferences.

Patient-Reported Outcomes Over 24 Months in Pediatric CKD: Findings From the MyKidneyHealth Cohort Study

The lived experience of children with chronic kidney disease (CKD) is poorly characterized. We examined the associations between patient-reported outcome (PRO) scores measuring their fatigue, sleep health, psychological distress, family relationships, and global health with clinical outcomes over time in children, adolescents, and younger adults with CKD and investigated how the PRO scores of this group compare with those of other children, adolescents, and younger adults. Prospective cohort study. 212 children, adolescentss, and adults aged 8 to 21 years with CKD and their parents recruited from 16 nephrology programs across North America. CKD stage, disease etiology, and sociodemographic and clinical variables. PRO scores over 2 years. We compared PRO scores in the CKD sample with a nationally representative general pediatric population (ages 8 to 17 years). Change of PROs over time and association of sociodemographic and clinical variables with PROs were assessed using multivariable regression models. For all time points, 84% of the parents and 77% of the children, adolescents, and younger adults completed PRO surveys . The baseline PRO scores for the participants with CKD revealed a higher burden of fatigue, sleep-related impairment, psychological distress, impaired global health, and poorer family relationships compared with the general pediatric population, with median score differences≥1 SD for fatigue and global health. The baseline PRO scores did not differ by CKD stage or glomerular versus nonglomerular etiology. Over 2 years, PROs were stable with a<1-point annual change on average on each measure and intraclass correlation coefficients ranging from 0.53 to 0.79, indicating high stability. Hospitalization and parent-reported sleep problems were associated with worse fatigue, psychological health, and global health scores (all P<0.04). We were unable to assess responsiveness to change with dialysis or transplant. Children with CKD experience a high yet stable burden of impairment across numerous PRO measures, especially fatigue and global health, independent of disease severity. These findings underscore the importance of assessing PROs, including fatigue and sleep measures, in this vulnerable population. Children with chronic kidney disease (CKD) have many treatment demands and experience many systemic effects. How CKD impacts the daily life of a child is poorly understood. We surveyed 212 children, adolescents, and younger adults with CKD and their parents over 24 months to assess the participants' well-being over time. Among children, adolescents, and younger adults with CKD we found a very high and persistent burden of psychological distress that did not differ by degree of CKD or type of kidney disease. The participants with CKD endorsed greater impairment in fatigue and global health compared with healthy children, adolescents, and younger adults, and parent-reported sleep problems were associated with poorer patient-reported outcome (PRO) scores across all domains. These findings emphasize the importance of including PRO measures, including fatigue and sleep measures, into routine clinical care to optimize the lived experience of children with CKD.

Art‐based research to explore children's lived experiences of dysgraphia

AbstractChildren have the right to voice views on matters that impact their lives, including writing disability. In this study, five children diagnosed with dysgraphia used art‐based research to depict their experiences of dysgraphia. The children described the impossibility of transferring ideas from head to paper and the difficult emotions associated with writing. The results highlighted a symbiosis between writing and identity, with dysgraphia adversely impacting the children's identity development. The study highlights the value of using art to communicate children's perceptions, aligned with inclusive practices. The insights shared offers caregivers, educators, and others scope to develop affirmative writing practices.