Family Impact Research Articles

The PedsQL Family Impact Module: Preliminary Reliability & Validity in Families of Children With Congenital Muscular Dystrophy

Abstract Date Presented 03/21/24 This study applied a propensity score-matching method to improve methodological rigor in examining the psychometric properties of the PedsQL Family Impact Module with parents of children with congenital muscular dystrophy in OT. Primary Author and Speaker: Yoonjeong Lim Additional Authors and Speakers: Ickpyo Hong, Areum Han

A multi-center cross-sectional comparison of parent-reported quality of life and bowel function between anorectal malformation and Hirschsprung's disease patients with versus those without Down syndrome.

Down syndrome (DS) is a common abnormality associated with anorectal malformation (ARM) and Hirschsprung's disease (HD). However, quality of life (QOL) in ARM and HD patients with DS is under-researched. This study compares parent-reported QOL and bowel function in ARM and HD patients with DS to those without. Between December 2020 to February 2023, parents of ARM and HD patients with and without DS aged 3-17 years who had undergone surgery > 12 months prior at four tertiary referral centers were recruited. We used the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales, General Well-Being (GWB) Scale and Family Impact (FI) Module questionnaires, and the Rintala bowel function score (BFS). There were 101 ARM, 9 (8.9%) of whom had DS; and 87 HD, of whom 6 (6.9%) had DS. Parent-reported Core scores in ARM and HD with DS were comparable to those without DS. However, ARM and HD with DS had worse scores in the FI Module and bowel function than those without DS. Although parent-reported QOL in ARM and HD with DS is similar to those without DS, family impact and BFS are worse. Our findings are limited by small sample size in proportion of DS patients.

HSPB1 alleviates acute-on-chronic liver failure via the P53/Bax pathway.

The mortality rate of acute-on-chronic liver failure (ACLF) remains significantly elevated; hence, this study aimed to investigate the impact of heat shock protein family B (small) member 1 (HSPB1) on ACLF in vivo and in vitro and the underlying mechanism. This study used the ACLF mouse model, and liver damage extent was studied employing Masson trichrome, hematoxylin and eosin (H&E), Sirius red staining, and serum biochemical indices. Similarly, hepatocyte injury in lipopolysaccharide (LPS)-induced L02 cells was evaluated using cell counting kit-8 assay, enzymatic activity, flow cytometry, and TUNEL assay, while the underlying mechanism was investigated using western blot. Results showed that the morphology of liver tissue in ACLF mice was changed and was characterized by cirrhosis, fibrosis, collagen fiber deposition, inflammatory cell infiltration, and elevated liver injury indices. Moreover, HSPB1 was upregulated in both ACLF patients and mice, where overexpressing HSPB1 was found to inhibit ACLF-induced liver damage. Similarly, the HSPB1 expression in LPS-treated L02 cell lines was also increased, where overexpressing HSPB1 was found to promote cell viability, inhibit liver injury-related enzyme activity, and suppress apoptosis. Mechanistic investigations revealed that HSPB1 was responsible for inhibiting p-P53 and Bax protein levels, where activated P53 counteracted HSPB1's effects on cellular behaviors. In conclusion, HSPB1 attenuated ACLF-induced liver injury in vivo and inhibited LPS-induced hepatocyte damage in vitro, suggesting that HSPB1 may be a novel target for ACLF therapy.

Oral Health-related Quality of Life of Children with Special Health Care Needs in Riyadh: A Cross-sectional Study.

To assess children's OHRQoL and associated factors among a sample of children with special needs in Riyadh, Saudi Arabia. A sample of 6- to 12-year-old children was obtained using convenience sampling from rehabilitation centers. Data were collected through a questionnaire and dental examination. The questionnaire included items related to the children's and their families' characteristics, oral health-related quality of life scales (Parental-Caregivers Perceptions Questionnaire [P-CPQ] and Family Impact Scale [FIS]), perceived health status, and dental care utilisation. Clinical examination was performed by a trained and calibrated dentist. The data were analysed using SPSS; descriptive and inferential data analyses were also performed using SPSS. The mean P-CPQ was 1.10 ± 0.74, and the mean FIS was 1.39 ± 0.88. There was a statistically significant correlation between P-CPQ and caries (r = 0.36, p = 0.02). After controlling for confounders, caries was associated with poor P-CPQ (B = 0.06, p = 0.024). Compared to low-income families, higher-income families had better P-CPQ (4000-8000 SAR: B = -1.36, p = 0.001). Poor oral health-related quality of life in Saudi children is associated with caries and low income. Preventive measures addressing social determinants are vital to control caries and promote oral health in children with special health-care needs.

Politics for Exclusion and Strategies for Inclusion: A Scoping Review of Nordic Family Reunification Policies, Practices, and Impact on Refugees

Politics for Exclusion and Strategies for Inclusion: A Scoping Review of Nordic Family Reunification Policies, Practices, and Impact on Refugees

Cardiovascular malformation associated with esophageal atresia

Abstract Background Congenital heart disease (CHD) is the commonest abnormality associated with esophageal atresia (EA). EA is a rare congenital malformation occurring in 3-4 in 10,000 births, in 87% occurs along with a distal tracheoesophageal fistula (TEF). The coexistence of a cardiac malformation and in addition, prematurity can be challenging and affects the further treatment and quality of life (QOL) of the child and family. Knowledge of the anatomical type and physiological consequences of CHD allows a well-coordinated treatment plan. Purpose The aim of this paper is to investigate whether the presence of underlying associated malformations, disease-specific problems and prematurity would have a considerable influence on the family of a child after surgical repair of EA. Methods We used a crossed-sectional questionnaire study. The impact of EA was assessed using an Authors-Designed Questionnaire (ADQ) to collect medical and sociodemographic background data (gestational week (HBD), comorbidities, type of EA, according to the Gross classification) as well as standardized questionnaire: the PedsQL™ Family Impact Module (PedsQL-FIM). Results Of the 76 children born with EA/TEF included in this study, 26% had a vascular malformation. Mean age was 5.3 years (SD = 3.7 years). Cardiovascular malformation associated with EA significantly (p=0.037) affects the functioning of the family in the emotional domain (FIM – ED). The QOL (p < 0,034) of children born before 37th HBD is lower that children born in term The presence of concomitant anomalies does affect the overall generic QoL. No statistical correlation was found between the type of anomaly (with/without TEF) and patients' QoL. Conclusions Cardiovascular malformation and prematurity significantly affect child’s QOL and the functioning of the family with EA. Patients who have undergone EA treatment require specialist outpatient care, not only in the first years of life, but also in adolescence and adulthood.

“I would be so proud of you guys and myself:” Exploring guided play learning interactions among Black caregivers and their children within a Black history home learning intervention during the COVID-19 pandemic

Existing literature on Black caregiver’s interactions with their children has overwhelmingly focused on parenting deficits and interventions designed to “fix” Black families. In utilizing the BlackCreate framework (2023), this study explores how Black caregivers intentionally crafted learning spaces for their children within the context of a six month intervention. Brilliant Joy in a Box was a six-month intervention developed in partnership with a Black woman entrepreneur that delivered caregiver-child Black history home learning boxes to families during the COVID-19 pandemic with the goal of addressing the impacts of persistent historical educational inequities for Black youth, the disproportionate impact of the pandemic Black families, and requests from community members seeking additional programming during the winter months. In the current study, we analyzed videos of 77 families interacting during a guided play activity. We found that the learning spaces created by Black families focused on four subject matters and their domains: literacy, scientific curiosity, math, and identity. We also found that Black caregivers organically utilized guided play to promote joyful interaction and learning. Findings underscore the importance of educators and school staff learning from families in order to reimagine learning and design community based interventions.

초등학교 학생역량의 잠재계층 전이 유형 분류와 영향 요인 탐색

Objectives The study, in order to understand how elementary school student competencies appear and strengthen competency-based education, we confirmed the classification of latent classes in the 4th and 5th grades of elementary school, identified the patterns of student competency transition, and examined the impact of individual, family, and school-related factors on each latent class. Methods For this purpose, Latent Profile Analysis and Latent Transition Analysis were conducted, utilizing data from the first year (2021) and the second year (2022) of panel data for 4th graders (total sample size of 3,671) from the Gyeongnam Education Longitudinal Study Information collected by the Gyeongsangnam-do Office of Education. Results In the 4th grade of elementary school, the latent class of student competency was classified into three groups: ‘low competency,’ ‘medium competency,’ and ‘high competency.’ In the 5th grade of elementary school, the latent class of student competency was classified into two groups: ‘low competency’ and ‘high competency.’ It was confirmed that some of the low competency group and the medium competency group in the 4th grade of elementary school were integrated into the low-competency group in the 5th grade, and that some of the medium competency group and the high-competency group in the 4th grade of elementary school were integrated into the high competency group in the 5th grade. Conclusions Factors significantly influencing the transition from the 4th-grade student competency latent class to that of the 5th grade were found to be self-directed learning, communication with parents, parental academic support, attitude towards assessment, and satisfaction with remote learning. Based on the key research results influencing student competency, educational policy implications for enhancing student competency were derived and discussed.

Effects of Distracted Parenting and Housing on Juvenile's Bullying Children

Background and Aim: This study aimed to find out the effect distracted parenting and housing that lead towards Juvenile's Bullying children Methods: Descriptive-correlational research design was used to study the impact of broken family, and housing factors on juvenile delinquency. Researcher used a Non – probability (purposive) sampling technique and selected one hundred juvenile offenders from Juveniles Bullying Station for data collection belonged to the age range between fourteen to eighteen years from 3th April to 10th November 2023. Present study explored various effects of juvenile delinquency related with broken family, and housing factors on juvenile. Reliability of instrument was determined through the use of Alpha Cronbach approach and the instrument validity was determined through a panel of experts. The analysis of the data was used descriptive statistics frequencies, percentages, mean, standard deviation and Analysis of Variance (ANOVA). In order to assess the effect distracted parenting and housing on Bullying children. Results: The findings of the present study reveal that indicate to high percentage theft (29%), drug abuse (21%), murder (16%) and rape (14%); while there is positive association among types of offenses committed by the juveniles with residence area (r=0.219), father married another woman (r=0.224), mother married another man (r=0.289), divorce (r=0.225), father death (r= 0.257) and mother death (r=0.246). Conclusion: The study concluded that there is positive association among types of offenses and misdemeanor committed by the juveniles with distracted parenting and housing.

A pivotal nutritional potential of understory vascular plants in Patagonian forests

Native forests can support wild and domestic herbivores, but their nutritional potential of understory vascular plants is rarely explored. We analysed the composition of understory plant species and their biochemical components to reveal the nutritional potential of forest types (deciduous, evergreen, mixed) and their associated open-lands (e.g. grasslands in forestlands) in Northern Patagonia. We proposed an approach combining our data (e.g. plant composition, occurrence frequency) with bibliographic research (e.g. Scopus database) to develop our findings. Data were evaluated using descriptive statistical analyses and multivariate analyses. This study presents the nutritional values for the 20 pivotal species under examination. The results highlight the significant impact of taxonomic families on nutritional profiles, where the species that presented the most relevant occurrence frequency: the herbs T. officinale (60.4 % of total occurrence frequency-TOF) and T. repens (47.9 % TOF), the graminoid H. lanatus (58 % TOF), and the fern B. penna marina (44.4 % TOF). Multivariate analyses showed that the first two PCA axes explained 76.1 % (p = 0.001) and 10.5 % (p = 1.000) of forest type variation, with ñire forests and open-lands having the highest palatable plant coverage. Biochemical PCA axes explained 52.1 % (p = 0.024) and 22.5 % (p = 0.874) of the variation, distinguishing species by protein content and structural components. The deciduous forests exhibited the highest coverage of palatable plants, while target plants with low palatability and high coverage were predominantly found in evergreen forest types. The confirmed presence of pivotal species across forest types and open-lands underscores its nutritional potential, characterised by highly digestible dry matter, crude protein, highly digestible non-nitrogenous nutrients, and relative feed value. Considering their widespread distribution and nutritional factors, the native and non-native plants merit attention due to their pivotal nutritional potential.

THE IMPACT OF FAMILY PLANNING ON MATERNAL HEALTH IN QUETTA, BALOCHISTAN: A QUALITATIVE STUDY

Balochistan, a region with one of the highest maternal mortality rates in Pakistan, faces significant challenges in maternal health. This qualitative study focuses on the impact of family planning on maternal health in Quetta, Balochistan, emphasizing the importance of understanding and improving health outcomes for women and their families. Objectives: The primary aim of this study is to explore the experiences and perspectives of women regarding the use of family planning methods and their impact on maternal health and well-being. It aims to compare the health outcomes of women who have utilized family planning methods with those who have not. Method: The research design includes in-depth interviews and focus group discussions (FGDs) with a diverse sample of women aged 18-45 years and healthcare providers at Sandeman Provincial Hospital, commonly known as Civil Hospital, in Quetta. Purposive sampling was employed to account for age, socioeconomic status, and education level variations. Forty-seven in-depth interviews were conducted to gather rich, contextual data. Thematic analysis was used to identify recurring themes and patterns in the responses. Results: Preliminary findings indicate several key themes, including the motivations for choosing family planning methods, the impact of these methods on reducing pregnancy risks, improving spacing between pregnancies, and enhancing postpartum recovery. Additional insights were gained into the factors influencing the adoption of family planning services, such as cultural norms, religious beliefs, and access to healthcare and information. Conclusion: The study underscores the critical role of family planning in enhancing maternal health outcomes in Quetta, Balochistan. It highlights the need for targeted educational and healthcare interventions to improve the accessibility and acceptance of family planning services, thereby contributing to the well-being of women and their families in the region.

Quality of life in pediatric patients on a paracorporeal ventricular assist device with a novel mobile driving system

BackgroundEXCOR VAD is the gold standard circulatory support for children with end-stage heart failure. Until recently, the only available driving unit was the stationary Ikus. This study (NCT04634708) investigates the impact of the novel mobile EXCOR Active driving unit on patients’ mobility and the quality of life (QoL) of their families. MethodsChildren on EXCOR VAD support with the Ikus who were mobilizable outside the hospital room were eligible for the prospective study. Patients remained on Ikus for 7 days, then switched to Excor Active and were observed for another 45 days. The endpoints were the rates of clinically relevant device exchanges (i.e., exchanges that could raise safety concerns for the patient) and successful patient outcomes, respectively. QoL of patients’ families was recorded through two validated questionnaires: the PedsQLTM Family Impact Module and DASS 21. Patients’ mobility and activity levels were monitored through diary entries. ResultsA total of 24 patients were enrolled of which 23 patients completed the study. No clinically relevant device exchanges occurred and there was a successful outcome in 22/23 (95.7%) patients. Changing from the Ikus to the EXCOR Active improved QoL as seen in family impact total score (from 53.8±19.8 to 66.5±20.8, p=0.005) and mental health (depression: moderate to mild, stress moderate to normal, both p < 0.05; anxiety: mild to normal, n.s.). Activity levels raised in both, mean time (from 100 to 300 minutes/day, p=0.011) and distance (from 30 to 1,110 meters/day, p=0.002). ConclusionsThe EXCOR Active driving unit is safe and performs equivalent to Ikus. This study indicates considerable improvement in patients’ mobility. In addition, data suggests that families’ QoL is positively affected by means of the novel driving unit.

Legacy: The meaning of lasting impact for family, business, and beyond

The concept of legacy exists at the core of family business research, yet as a construct, the nature of what legacy is and why and how legacy matters across generations has been poorly understood (Hammond, Pearson, & Holt, 2016). This lack of conceptual clarity has limited legacy research in the domain of family business. In this article, we provide a comprehensive definition of legacy that can be used to draw connections across existing legacy research and open new avenues of inquiry critical to understanding both family firms and legacy itself.

The relationship of family support and peer acceptance in children aged 4–6: the mediating role of emotion regulation strategies

ABSTRACT To understand the relationship between family support, peer acceptance, and emotional regulation strategies, this study surveyed 595 four to six years old children and their parents from Henan Province, central China, using the Family Support Questionnaire, Emotional Regulation Strategy Questionnaire, and Preschool Children Test. The results showed that (1) Family support, peer acceptance, and emotion regulation strategies were significantly correlated; (2) Family support could significantly positively predict children's peer acceptance; (3) Emotion regulation strategies play partial mediating roles between family support and children's peer acceptance. The findings highlight that it is crucial to consider the family's impact on children's peer interactions and emotional regulation strategies. It enhances family systems theory by clarifying the mechanisms linking family support to children’s peer acceptance. Additionally, it argues that parents should assist children in acquiring positive emotion regulation strategies while simultaneously enhancing the level of family support, thereby enhancing children’s peer acceptance.

Impact of family and caregiver factors on development and behaviours in maltreated young children

Introduction: This study aimed to evaluate the prevalence of developmental and emotional/behavioural concerns in maltreated children and to examine the impact of adverse family/caregiver risk factors on these outcomes. Method: We analysed family demographic and baseline data of 132 maltreated children and their caregivers from a family support programme in Singapore. We examined the associations of 3 main risk factors (i.e. caregiver mental health, educational attainment and family socio-economic status [SES]) with developmental/behavioural outcomes using multivariable logistic regression, controlling for caregiver relationship to the child. Caregiver mental health was assessed using the Patient Health Questionnaire 9 (PHQ-9) and General Anxiety Disorder 7 (GAD-7) tools. Developmental/behavioural outcomes were assessed using the Ages and Stages Questionnaires (ASQ-3), ASQ-Social-Emotional (ASQ-SE), and the Child Behaviour Checklist (CBCL). Results: The children ranged in age, from 2 months to 3 years 11 months (median age 1.7 years, interquartile range [IQR] 0.9–2.6). Among caregivers, 86 (65.2%) were biological mothers, 11 (8.3%) were biological fathers, and 35 (26.5%) were foster parents or extended family members. Low family SES was associated with communication concerns on the ASQ-3 (adjusted odds ratio [AOR] 3.04, 95% CI 1.08-8.57, P=0.04). Caregiver mental health concerns were associated with increased behavioural concerns on the CBCL (AOR 6.54, 95% CI 1.83–23.33, P=0.004) and higher scores on the ASQ-SE (AOR 7.78, 95% CI 2.38–25.38, P=0.001). Conclusion: Maltreated children with caregivers experiencing mental health issues are more likely to have heightened emotional and behavioural concerns. Those from low SES families are also at increased risk of language delay, affecting their communication.

Translating 'proportionate universal healthcare' into meaningful system design to optimize equity in child and family services.

To conduct a child and family health nursing service redesign to improve pathways of access, response and outcomes for all families with children aged 0-5 years. The study was conducted as an iterative, mixed-method study of the process and impact of the service redesign, informed by a participatory action research paradigm and the NSW Agency for Clinical Innovation process for developing a model of care. Diagnostic, solution design, implementation and sustainability phases were undertaken. Quantitative analyses were undertaken of administrative data, and child and family health nurse and client surveys. Qualitative analyses were undertaken of design workshops. The administrative data demonstrated that prior to the redesign service provision was the same for all clients regardless of levels of risk. The design solution, developed through a series of diagnostic and visioning workshops, included multiple new client response pathways. Implementation included development of tools and training. Sustainability of the redistribution of resources to the new pathways was assessed though an evaluation demonstrating a positive impact for families with adversity, with no deleterious effects for families receiving a universal response, and improvements in the emotional labour undertaken by nurses. Despite this, nurse burnout increased post-redesign. The shift from equal services (everyone receives the same) to equitable proportionate universal provision in response to need can be achieved and has positive impacts for nurses and families. This study shows the value of undertaking a systematic and participatory approach to service redesign. A proportionate universalism approach can ensure that early childhood nursing services are available to all in relation to needs. The Revised Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0) check-list was used to guide reporting. No patient or public contribution.

Nursing students' conceptualization of environmental problems: a descriptive cross-sectional study

BackgroundThe significant challenges of the twenty-first century revolve around environmental issues. Knowing individuals' environmental attitudes and what they see as environmental problems is crucial to mobilizing them to action. Nurses hold a significant responsibility in addressing and combating environmental challenges. Research aimThis study had two objectives: understanding how nursing students classify environmental issues and examining the effects of gender, economic status, school district, family environmental awareness, and perception of global responsibility on their conceptualization of environmental issues. DesignA descriptive cross-sectional study using a questionnaire. Setting and participantsThe sample consisted of 1466 nursing students from four faculties of two public universities in Turkiye. The study was conducted between January and April 2023. MethodsData were collected using a form that included 19 issues ranging from ecological problems to social problems related to the environment, as well as the Global Social Responsibility Scale (GSRS). The data were analyzed using explanatory factor analysis, multiple regression, and mediator analysis. ResultsParticipants classified the environmental issues as eco-social-oriented and human-oriented. First-year students (B = -0.201), male students (B = -0.263), those studying in rural schools (B = -0.123), and those who rarely discuss environmental issues in the family (B = -0.197) describe the problems in the eco-social oriented dimension as less “environmental.” The increase in the action-oriented responsibility (B = 0.014) and ecological responsibility (B = 0.077) scores of The Global Social Responsibility Scale leads to an increase in recognizing the problems in this area as environmental issues. Similarly, first-year students (B = -0.340), male students (B = -0.293), and those who rarely discussed environmental issues in the family (B = -0.243) led to a decrease in recognizing problems as environmental in the human-oriented issues dimension. In contrast, poor socioeconomic perception (B = 0.245), negative perception of the future (B = 0.145), and increased action-oriented responsibility (B = 0.024) and ecological responsibility (B = 0.042) led to an increase in recognition of human-oriented issues. The increase in the national responsibility score decreased the score of environmental assessment of the problems in this area (B = -0.017). In addition, the perception of global responsibility partially mediates between students' sociodemographic characteristics and environmental issues recognition scores in both sub-dimensions. ConclusionThis study presents results that point to individual differences among nursing students in addressing environmental issues, reveal the impact of family on these differences, and finally show the importance of curricula to increase students' global social responsibility during their education.

Investigational Management for a Positive NIPT Result - Case Report

Non-invasive prenatal testing (NIPT), since its introduction in 2011, has revolutionized prenatal screening, becoming widely used globally and replacing traditional screening methods in developed countries. The accuracy of NIPT in detecting aneuploidies is etremely high and there has been a recent trend towards improving NIPT for detecting microdeletion and microduplication syndromes, monogenic diseases, fetal se determination, and RH genotyping. Significant progress has been made in molecular analysis techniques of fetal DNA, including methods such as massively parallel sequencing, RNA-based testing, digital PCR, and single nucleotide polymorphism analysis. We present the case of a 32-year-old patient who, at 12 weeks of gestation, had a non-invasive prenatal test result showing a maternal 22q11.2 deletion. Following genetic consultation, further investigations were conducted to stratify the fetal risk of inheriting the microdeletion syndrome. As a result, microarray CGH cytoarray from amniotic fluid was performed, and no 22q11.2 deletion was detected. In this case, complete elucidation of the origin of the deletion found in NIPT could not be achieved, as it would require arrayCGH testing for the mother, a test that was not performed due to financial reasons. Given the high rate of genetic syndromes with potential impact on fetal development and familial psychological impact, we wish to emphasize the necessity of financial support from the state to introduce non-invasive prenatal testing into the list of reimbursed analyses covered by health insurance. This would enable superior testing and, implicitly, genetic prevention of all pregnancies, facilitating appropriate risk stratification of pregnancies in our country.

Tantangan Keluarga Broken Home (Studi Tentang Motivasi Belajar Siswa Di Smp Negeri 2 Ngantru Tulungagung)

This research aims to determine the influence and impact of a broken home family on student learning motivation at SMP Negeri 2 Ngantru Tulungagung. Using quantitative methods and data analysis using SPSS. The results of the research show that there is a significant influence between broken home families on student learning motivation. The results of the correlation test using Product Moment show a significance value of 0.008&lt;0.05, indicating that the two variables are significant. Simple Linear Regression results also support this finding with a significance value of 0.008, which is in accordance with the guidelines that a significance value &lt;0.05 indicates a significant effect. Therefore, it can be concluded that the Ha hypothesis is accepted and H0 is rejected, which means that broken home families have a significant and negative effect on student learning motivation at SMP Negeri 2 Tulungagung.

Anorectal malformation and Hirschsprung’s disease: a cross-sectional multicentre comparison of quality of life and bowel function to a healthy population

PurposeChildren with anorectal malformation (ARM) and Hirschsprung’s disease (HD) often experience bowel symptoms into adulthood, despite definitive surgery. This study evaluates the quality of life (QOL) and bowel functional outcome...