Family Impact Research Articles

Exploring the Influence of Preexisting Conditions and Infection Factors on Pediatric Long COVID Symptoms and Quality of Life.

Pediatric postacute sequelae of SARS-CoV-2 or "long COVID" is a multisystemic disease with a wide range of symptoms more than 4 wks after initial infection. This study explores the quality of life in children with long COVID and how preexisting conditions affect symptoms and quality of life. A retrospective single-center study of 97 patients was completed to analyze PedsQL quality of life in pediatric patients with long COVID and associations between preexisting conditions, long COVID symptoms, and PedsQL scores. Children with long COVID had significantly lower quality of life compared with previously published normative samples (PedsQL Core: P < 0.001; Fatigue: P < 0.001; Family Impact: P < 0.001). Number of long COVID symptoms, age, and preexisting history of depression, allergies, and developmental delay affected the overall fatigue PedsQL scores. Preexisting mood disorders were associated with a higher prevalence of worsening mental health symptoms (anxiety, P = 0.01; depression, P = 0.04), dizziness/lightheadedness/vertigo ( P = 0.02), and change in appetite ( P = 0.04). Long COVID has a significant impact on the quality of life of children and their families. Children with long COVID can benefit from multidisciplinary care addressing fatigue, mental health, and family coping.

Siblings of children with type 1 diabetes mellitus: Psychosocial health, coping

PurposeThe literature widely reported the psychosocial toll of Type 1 diabetes mellitus (T1DM) on patients, though the family functioning of T1DM patients, particularly siblings, has traditionally obtained far less consideration. This study was framed to investigate the psychosocial adjustments of siblings of children with T1DM and to evaluate the frequencies and the perceived efficacy of coping strategies adopted by siblings. Design and methodsThis cross-sectional study included parents (n = 100) and siblings (n = 100) of children with T1DM. Parents completed the following questionnaires: Parenting Stress Index-Short Form, Pediatric Quality of Life Inventory™ Family Impact Module, and Strengths and Difficulties Questionnaire (SDQ), while siblings completed SDQ self-report and kidcope questionnaires. ResultsThirty-eight percent of siblings of children with T1DM reported significant emotional and behavioral problems related to HbA1c level, higher parenting stress, and worse family functioning (p < 0.05). Younger siblings considered social support and distraction the most effective coping strategies, while older siblings perceived adaptive coping as the most effective. Social support and problem-solving were found to be protective factors for better sibling adjustments; meanwhile, better family adjustments were related to social support and cognitive restructuring (p < 0.05). ConclusionsResults demonstrate that siblings of children with T1DM experienced psychosocial maladjustment. Sibling adjustments are family interrelated. Adaptive coping strategies may play a buffer role for siblings and family adjustment. Practice implicationsThe study highlights the need for comprehensive evaluations of family dynamics and sibling psychosocial functioning to provide appropriate family-centered care.

The Role of Self-Regulation in Childrens Eating Behavior

Considering food, many people are particularly interested. Food can satisfy hunger and make some foods highly creative. People have an appetite, and more advertisements about food are attractive. Some people want to eat something delicious to celebrate when they are happy, and some people eat to relieve when they feel sad or depressed. There are many delicious foods for people to choose from, however, these food might not be good for children. This paper presents the concept of self-regulation and how self-regulation plays a role in childrens dietary behaviors. The purpose is to find out what impacts childrens healthy eating habits from an early age. A healthy diet has different effects on children from childhood to later stages. If eating healthily is the basis, it can make child have a good and stable mood as well. In addition, childrens self-regulation in dietary behaviors can be influenced by factors of the environment, e.g., the impact of family or parental lifestyles. When a family is well-educated and parents create a harmonious atmosphere, the childs daily diet and behavior habits are positive, which also lays the foundation for the future. On the contrary, if children live under malnutrition, it will affect their living habits in youth and adulthood. Finally, there are the external factors that come into playing a role. Moreover, another restriction should also be considered. Children should have a balanced diet every day. Snacks can be added between meals, but they will not be used as the main meal. This review can provide some insights for healthy diet related programs at schools and communities.

Clinically meaningful change threshold in health‐related quality of life among patients aged 6 months to 5 years with atopic dermatitis and their caregiver(s)/family

AbstractBackgroundAtopic dermatitis (AD) significantly impacts health‐related quality of life (HRQoL) in children and their caregiver(s)/family. Measures to assess HRQoL include the Children's Dermatology Life Quality Index (CDLQI), Infants' Dermatitis Quality of Life Index (IDQoL) and Dermatitis Family Impact (DFI) questionnaire. Currently, there are no established clinically meaningful within‐person change thresholds for these measures in young children (6 months to 5 years) and their caregiver(s)/family.ObjectivesTo determine the clinically meaningful within‐person change thresholds for CDLQI (4–5 years), IDQoL (&lt;4 years) and DFI scores in children aged 6 months to 5 years with moderate‐to‐severe AD and their caregiver(s)/family.MethodsData from the 16‐week, randomised, double‐blind, placebo‐controlled, phase 3 LIBERTY AD PRESCHOOL part B study in children aged 6 months to 5 years were used. The anchor‐based method was used to assess meaningful change thresholds for the three instruments, using the Caregiver Global Impression of Disease (CGID; range: ‘no symptoms’ to ‘very severe’) as the primary anchor, and Caregiver Global Impression of Change (CGIC; range: ‘much better’ to ‘much worse’) as a supportive anchor.ResultsThe mean CDLQI change scores were −6.3 and −9.5 based on CGID 1‐point improvement and CGIC improvement of ‘a little better’, respectively. The mean IDQoL change scores were −5.6 and −3.4 based on the CGID and CGIC anchors. The mean DFI change scores were −7.0 and −6.7 based on the CGID and CGIC anchors.ConclusionsBased on primary anchor findings, improvements of ≥6 points on the CDLQI total score for children aged 4–5 years and on the IDQoL total score for children aged &lt;4 years were recommended as the clinically meaningful within‐person change thresholds in children with moderate‐to‐severe AD. A 7‐point improvement on the DFI total score may be considered as the meaningful threshold for the caregiver(s)/family of children aged 6 months to 5 years with moderate‐to‐severe AD.

An Integrative Review of Grandparents' Experiences in Childhood Cancer.

Background: While it is generally accepted that childhood cancer has a profound impact on the family unit, there has been little focus on the experiences of grandparents who are affected by the diagnosis. Grandparents play an integral role throughout the child's illness trajectory as they are called upon to provide support physically, spiritually, emotionally, and at times financially. This integrative review examines the current research specific to grandparents' experiences of childhood cancer. Method: CINAHL, PubMed, and Web of Science were searched using the key terms "grandparent*" AND "experience*" AND "child*" AND "cancer." Inclusion criteria used for this review were as follows: electronic full text, peer-reviewed, and published in English between 2012 and 2022. Results: Grandparents of children with cancer experience an emotional whirlwind, a double-whammy effect, the giving and receiving of support, a balancing act, and attempt to find meaning throughout the diagnosis. They feel unacknowledged and unsupported by the health care team. Discussion: It is difficult to deny the emotional and familial impact the child's cancer diagnosis has not only on the child and immediate family but also on grandparents. While the reports of grandparents are consistent across studies, there have been lackluster attempts to mitigate the suffering experienced by this group. Pediatric oncology nurses, with their family-centered care approach, are in a unique position to uncover and meet the specific needs of grandparents of children diagnosed with cancer.

Health-Related Quality of Life for Parents of Infants with Bronchopulmonary Dysplasia

To determine how bronchopulmonary dysplasia (BPD) affects health-related quality of life (HRQL) among infants from NICU hospitalization through 1-year postdischarge. This was a prospective cohort study of infants with BPD and their parents. Parent HRQL was measured with the PedsQL Family Impact Module before NICU discharge and 3- and 12-months post-discharge. At 12months, parent-reported child health outcomes included questions from the Test of Respiratory and Asthma Control in Kids, Warner Initial Developmental Evaluation of Adaptive and Functional Skills, and National Survey of Children with Special Health Care Needs. HRQL change over time was assessed by multivariable linear regression. Of 145 dyads, 129 (89%) completed 3-month follow-up, and 113 (78%) completed 12-month follow-up. In the NICU, lower HRQL was associated with earlier gestational age, postnatal corticosteroids, outborn status, and gastrostomy tubes. At 3months, lower HRQL was associated with readmissions and home oxygen use. At 12months, lower HRQL was associated with parent-reported difficulty breathing, lower developmental scores, and not playing with other children. At 3 and 12months, 81% of parents reported similar or improved HRQL compared with the NICU period. Parents reporting infant respiratory symptoms experienced less improvement. BPD affects parent HRQL over the first year. Most parents report similar or better HRQL after discharge compared with the NICU stay. Less improvement is reported by parents of infants experiencing respiratory symptoms at 12months. Efforts to improve parent HRQL should target respiratory symptoms and social isolation.

The Impact of Family Ownership on Capital Structure and Business Performance

Financial decision making in family companies is a topical issue that has arisen from an awareness of the significant impact of family businesses on the economies of individual countries. This article deals with the capital structure and business performance of family firms in the Czech Republic, as there is still a significant gap in family business research and empirical verification. This study aims to investigate Czech family businesses’ corporate financing practices and compare them with population data from all active companies. The literature distinguishes between the positive and negative impacts of family ownership on capital structure and performance. Our empirical findings hypothesise that family businesses are more leveraged than non-family firms and vice versa. At the same time, a slightly positive impact from family influence on firm financial performance is indicated. This study uses descriptive statistics to detect family influence on corporate capital structure and financial performance regarding business sectors. The results of this study indicate that Czech family firms are less indebted than all/non-family businesses, and that they have proved to be more profitable in terms of ROEs and ROAs. Furthermore, significant differences in financial characteristics have been identified not just between individual business sectors but also between sample family firms and all/non-family firms within one business sector.

Capturing The Meaning of Life and Self-Love Among Transgender Women: Unveiling Experiences, Family Impacts, and Struggles in Achieving a Meaningful Life

Transwomen is an abbreviation for transgender women, individuals who choose a gender that differs from their biological sex. Previous studies have identified discrimination and issues related to the gender identity and sexuality of trans women. This research aims to portray the meaning of life for trans women in Palangkaraya. Participants were selected through snowball sampling. Data were collected through observations and interviews. This research employs a descriptive phenomenological data analysis to delve into the life experiences of trans women in detail and depth. This research study revealed a new theme, which encompasses the aspect of self-love as a part of the lives of trans women participants in their pursuit of a meaningful life. In this study, it was observed that trans women in the city of Palangkaraya undergo various and challenging life processes in their quest for a meaningful existence. Factors such as family, relatives, employment, thought patterns, attitudes, and personality play a crucial role in guiding trans women towards living a meaningful life and achieving true meaningfulness in life.

Very-Long-Chain Acyl-CoA Dehydrogenase Deficiency: Family Impact and Perspectives.

Very-Long-Chain Acyl-CoA Dehydrogenase Deficiency (VLCADD) is a fatty acid oxidation disorder characterized by the decreased ability of the enzyme very-long-chain acyl-CoA dehydrogenase to break down fatty acids with 14 to 20-long carbon chains. The resulting clinical manifestations are variable in severity and include hypoketotic hypoglycemia, rhabdomyolysis, and cardiomyopathy. Treatment can consist of limiting the dietary intake of long-chain fatty acids, the prevention of fasting, and the supplementation of medium-chain fats. This study, conducted in the context of a 5-year long-term follow-up on VLCADD, evaluates how the diagnosis of this fatty acid disorder impacts the family, specifically as it relates to the medical diet and barriers to care. Caregivers (n = 10) of individuals with VLCADD responded to a survey about how VLCADD potentially impacts their family. The review included the clinical outcomes of the patients (n = 11), covering instances of rhabdomyolysis, cardiomyopathy, and hospitalizations related to VLCADD. Families affected by VLCADD experience barriers to care, including difficulties with finances, ability to work, and access to nutrition.

Managing Identity When Worlds Collide

Stigma is a powerful social construct that fluctuates, yet it can stay with a person for their entire life. When someone moves from a stigmatized to a socially acceptable position, it creates tension between their social and personal identity. This article examines how stigma is internalized and presented in different contexts. The author utilizes autoethnography to explore how his family, socioeconomic class, criminal history, vocation, and religion intersect and impact how he manages and presents stigma. The author finds that his transition from a stigmatized identity leaves him in a liminal space where he does not belong to the new or old group. The significance of the study is that it offers insight into how people process and present stigma, which is helpful for rehabilitation and recovery.

PB0269 Health-Related Quality of Life of, and Burden of Caring for, Thai Patients with Hemophilia Using the Canadian Hemophilia Outcomes-Kids' Life Assessment Tool v3.0 and Hemophilia Family Impact Tool

PB0269 Health-Related Quality of Life of, and Burden of Caring for, Thai Patients with Hemophilia Using the Canadian Hemophilia Outcomes-Kids' Life Assessment Tool v3.0 and Hemophilia Family Impact Tool

Parental perceptions of social life before and after attending a parent training program for children with complex communication needs: the ComAlong example

Parent training programs aimed at improving language outcomes for children with complex communication needs have predominantly been evaluated on child-centered outcomes and less often on the impact on social life or parental well-being. This study examined parent perceptions of social life before and after ComAlong, a group intervention providing parents with knowledge and training in responsive communication, environmental-milieu teaching strategies and augmentative and alternative communication (AAC). Parents (N = 467) completed questionnaires during the first and last sessions of ComAlong groups held in Sweden 2012 to 2018. Main outcome measure was change in the Social Life Scale from the Family Impact Questionnaire. Associations between this measure and demographic factors of parents and children were analyzed, along with reported change in parents’ use of AAC. Pre-post comparisons revealed small significant positive changes in perceived impact of social life following intervention. The magnitude of the positive change was larger among parents of children with non-syndromic diagnoses and parents of children with autism spectrum disorder or attention deficit hyper activity disorder (ADHD). Differences in social life impact was not associated with parents’ gender, language proficiency, age, or educational background. In conclusion, communication-focused parent training programs can have a positive impact on social family life and may thereby influence children’s participation.

Accuracy and impact on quality of life of real-time continuous glucose monitoring in children with hyperinsulinaemic hypoglycaemia.

Continuous glucose monitoring (CGM) is the standard of care for glucose monitoring in children with diabetes, however there are limited data reporting their use in hyperinsulinaemic hypoglycaemia (HH). Here, we evaluate CGM accuracy and its impact on quality of life in children with HH. Real-time CGM (Dexcom G5 and G6) was used in children with HH aged 0-16years. Data from self-monitoring capillary blood glucose (CBG) and CGM were collected over a period of up to 28days and analysed. Quality of life was assessed by the PedsQL4.0 general module and PedsQL2.0 family impact module, completed by children and their parents/carers before and after CGM insertion. Analysis of accuracy metrics included mean absolute relative difference (MARD) and proportion of CGM values within 15, 20, and 30% or 15, 20, and 30 mg/dL of reference glucose values >100 mg/dL or ≤100 mg/dL, respectively (% 15/15, % 20/20, % 30/30). Clinical reliability was assessed with Clarke error grid (CEG) analyses. Prospective longitudinal study with data analysed from 40 children. The overall MARD between reference glucose and paired CGM values (n=4,928) was 13.0% (Dexcom G5 12.8%, Dexcom G6 13.1%). The proportion of readings meeting %15/15 and %20/20 were 77.3% and 86.4%, respectively, with CEG analysis demonstrating 97.4% of all values in zones A and B. Within the hypoglycaemia range (<70 mg/dL), the median ARD was 11.4% with a sensitivity and specificity of 64.2% and 91.3%, respectively. Overall PedsQL child report at baseline and endpoint were 57.6 (50.5 - 75.8) and 87.0 (82.9 - 91.2), and for parents were 60.3 (44.8 - 66.0) and 85.3 (83.7 - 91.3), respectively (both p<0.001). Use of CGM for children with HH is feasible, with clinically acceptable accuracy, particularly in the hypoglycaemic range. Quality of life measures demonstrate significant improvement after CGM use. These data are important to explore use of CGM in disease indications, including neonatal and paediatric diabetes, cystic fibrosis and glycogen storage disorders.

Quality of Life Among Caregivers of Children with Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder: A Cross Sectional Study.

Caregivers of children with attention deficit-hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) experience more stress than caregivers of typically developing children but there is limited research evaluating caregivers' quality of life (QoL). This study aimed to describe the association of caregiver QoL in children with ASD and/or ADHD. This study included patients with ADHD and/or ASD seen in one pediatric specialty clinic between September 2018-August 2020. Caregivers were classified as those caring for children with ASD-only, ADHD-only, or youth with both conditions (ADHD + ASD). An adapted version of the PedsQL Family Impact Module was used to measure caregiver QoL. The sample included caregivers of 931 children. The majority of these children were male (74.7%), non-Hispanic white (63.3%), and aged 6 to 12 years (57.8%). Across the groups, significant differences were observed in patient age (p < 0.0001), preferred language (p = 0.005), and insurance (p = 0.001). Caregivers of non-Hispanic Black children had 4-times the odds of reporting feeling isolated from others (OR 4.36, 95% CI 1.19-16.00 p = 0.03). Those caring for children with ADHD-only had significantly lower odds of reporting helplessness or hopelessness (OR 0.45, 95% CI 0.26-0.80, p = 0.004), and difficulty talking about their child's health with others (OR 0.30, 95% CI 0.17-0.54, p < 0.0001). Similarly, caregivers of children who had ADHD + ASD reported higher odds of difficulty making decisions together as a family (OR 14.18, 95% CI 1.15-17.91, p=0.04) and difficulty solving family problems together (OR 45.12, 95% CI 2.70-752.87), p = 0.008). Caring for children with ADHD and/or ASD may affect caregiver QoL.

Türkiye'de Büyükşehirde Yaşayan Evli Kadınların Uyguladıkları Aile Planlaması Yöntemine İlişkin Görüşleri: Nitel Bir Araştırma

Objective: This research was conducted to examine the views of women on four different types of family planning they use. Materials and Methods: The period of time for this qualitative study was January through February 2023. 33 Istanbul-based women made up the study's sample. In order to create the greatest possible diversity, the study's participants' women were divided into groups according to their use of intrauterine devices (IUDs), combination oral contraceptives (COC), condoms, and withdrawal methods. Results: Based on information from 33 interviews with Turkish women, this qualitative research. Four different family planning strategies, the decision-making process, attitudes regarding the impact of family planning on sexual life, and four major themes were identified in the article. It has been observed that women are influenced by the environment and health personnel in family planning method choices and decision-making processes, they benefit from the internet, and their spouses are competent in the decision-making process. Conclusion: In this study, it was found that gender norms gave men the authority to decide on reproduction; this means that their partner usually has the final say on the number of children a woman has or planning a pregnancy. The fact that women do not have their own preferences is beneficial in terms of documenting these preferences and concerns of health personnel, as well as integrating them into the design, implementation and evaluation of the intervention, taking into account their caution towards interventions.

Protocol for a randomized controlled trial to evaluate a year-long (NICU-to-home) evidence-based, high dose physical therapy intervention in infants at risk of neuromotor delay.

Developmental disabilities and neuromotor delay adversely affect long-term neuromuscular function and quality of life. Current evidence suggests that early therapeutic intervention reduces the severity of motor delay by harnessing neuroplastic potential during infancy. To date, most early therapeutic intervention trials are of limited duration and do not begin soon after birth and thus do not take full advantage of early neuroplasticity. The Corbett Ryan-Northwestern-Shirley Ryan AbilityLab-Lurie Children's Infant Early Detection, Intervention and Prevention Project (Project Corbett Ryan) is a multi-site longitudinal randomized controlled trial to evaluate the efficacy of an evidence-based physical therapy intervention initiated in the neonatal intensive care unit (NICU) and continuing to 12 months of age (corrected when applicable). The study integrates five key principles: active learning, environmental enrichment, caregiver engagement, a strengths-based approach, and high dosage (ClinicalTrials.gov identifier NCT05568264). We will recruit 192 infants at risk for neuromotor delay who were admitted to the NICU. Infants will be randomized to either a standard-of-care group or an intervention group; infants in both groups will have access to standard-of-care services. The intervention is initiated in the NICU and continues in the infant's home until 12 months of age. Participants will receive twice-weekly physical therapy sessions and caregiver-guided daily activities, assigned by the therapist, targeting collaboratively identified goals. We will use various standardized clinical assessments (General Movement Assessment; Bayley Scales of Infant and Toddler Development, 4th Edition (Bayley-4); Test of Infant Motor Performance; Pediatric Quality of Life Inventory Family Impact Module; Alberta Infant Motor Scale; Neurological, Sensory, Motor, Developmental Assessment; Hammersmith Infant Neurological Examination) as well as novel technology-based tools (wearable sensors, video-based pose estimation) to evaluate neuromotor status and development throughout the course of the study. The primary outcome is the Bayley-4 motor score at 12 months; we will compare scores in infants receiving the intervention vs. standard-of-care therapy.

Revisiting the impact of families on family firm performance

Revisiting the impact of families on family firm performance

Post-PICU sleep efficiency and quality of life in infants and toddlers with acquired brain injury.

We aimed to investigate the use of sleep efficiency (SE) as a measure of sleep disturbance in infants and toddlers with acquired brain injury (ABI) and evaluate associations between SE and child health-related quality of life and family outcomes. Retrospective cohort study of 101 children ages 3-36 months who survived critical care for ABI. SE was quantified from the Brief Infant Sleep Questionnaire as a ratio of nighttime sleep to total time in bed; poor SE was defined as < 80%. Outcome measures included the Pediatric Quality of Life Inventory Core Total Score (health-related quality of life) and Family Impact Module Total Score. Spearman's correlation quantified associations between SE and outcomes. Multivariable linear regression tested association between poor SE and health-related quality of life controlling for significant covariates (age, diagnosis, comorbidities, worsening Functional Status Scale). Following ABI, median SE was 91.7 (interquartile range = 83.3, 95.5). Nineteen (19%) children had poor SE (< 80%). SE correlated significantly with quality of life (Spearman's correlation = .307) and Family Impact Module (Spearman's correlation = .309; both P < .01). When controlling for covariates, poor SE significantly increased risk for lower health-related quality of life (β-coefficient = -7.0; 95% confidence interval= -13.4, -0.6). One in five infants and young children with ABI have poor SE that is associated with poorer child and family health outcomes. Our study underscores the potential importance of sleep following ABI to optimize recovery and the need for additional investigation of SE in infants and young children. Klapp JM, Hall TA, Riley AR, Janzen D, Williams CN. Post-PICU sleep efficiency and quality of life in infants and toddlers with acquired brain injury. J Clin Sleep Med. 2024;20(1):75-83.

Effects of the Dominate Plant Families on Elevation Gradient Pattern of Community Structure in a Subtropical Forest

Dominant groups and rare groups often coexist in forests. Dominate plant families generally have more species diversity and occupy most of the biomass. However, their effects on community construction and species diversity maintenance remain to be studied. This study aims to investigate this question by using the two dominant plant families in a Chinese subtropical forest (Lauraceae and Fagaceae). In this study, 22 forest dynamic plots were established in the forest distribution area of Daming Mountain Nature Reserve at an elevation of 300–1400 m. We explored the elevational change in the community structure and its relationship with Lauraceae and Fagaceae using generalized additive models (GAM) and a regression analysis. Then we used a correlation analysis to describe the relationship between environmental factors and the community structure. Our results showed the species diversity index showed a hump-shape trend along the elevation, and the total basal area showed no significant change along the elevation. The richness of Lauraceae and Fagaceae showed a positive correlation with the species diversity, but only the richness of Fagaceae showed a positive correlated with the total basal area. Species diversity was positively correlated with soil total nitrogen and soil organic matter. Species diversity and the total basal area were negatively correlated with the soil pH. In summary, Lauraceae and Fagaceae are correlated for community structure, and this correlation is not affected by elevation. Fagaceae has played a more important role than Lauranceae. This study highlights the impact of dominant plant families on the forest community assembly along the elevational transect.

The Impact of YouTube and Family on Religiusity Behavior and Pro-Social Behavior of Teenagers in The City of Sidoarjo

The Impact of YouTube and Family on Religiusity Behavior and Pro-Social Behavior of Teenagers in The City of Sidoarjo