Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross-sectional study.

BACKGROUND: Having a haematological condition can adversely affect the quality of life (QoL) of family members/partners of patients. It is important to measure this often ignored burden in order to implement appropriate supportive interventions. OBJECTIVE: To measure current impact of haematological conditions on the QoL of family members/partners of patients, using the Family Reported Outcome Measure-16 (FROM-16). METHODS: A cross-sectional study, recruited online through patient support groups, involved UK family members/partners of people with haematological conditions completing the FROM-16. RESULTS: 183 family members/partners (mean age = 60.5 years, SD = 13.2; females = 62.8%) of patients (mean age = 64.1, SD = 12.8; females = 46.4%) with 12 haematological conditions completed the FROM-16. The FROM-16 mean total score was 14.0 (SD = 7.2), meaning 'a moderate effect on QoL'. The mean FROM-16 scores of family members of people with multiple myeloma (mean = 15.8, SD = 6.3, n = 99) and other haematological malignancies (mean = 13.9, SD = 7.8, n = 29) were higher than of people with pernicious anaemia (mean = 10.7, SD = 7.5, n = 47) and other non-malignant conditions (mean = 11, SD = 7.4, n = 56, p < .01). Over one third (36.1%, n = 183) of family members experienced a 'very large effect' (FROM-16 score>16) on their quality of life. CONCLUSIONS: Haematological conditions, in particular those of malignant type, impact the QoL of family members/partners of patients. Healthcare professionals can now, using FROM-16, identify those most affected and should consider how to provide appropriate holistic support within routine practice.

How military-related stress and family relationships are associated with perceptions of work-family impact for married male service members with adolescent children.

Family members' perceptions of challenges associated with military life can spillover to their relationships with one another and, in turn, inform service members' beliefs of how their work impacts family life. The current study examined connections between active-duty fathers', civilian mothers', and adolescents' perceptions of military-related stress, adolescents' perceptions of quality of family relationships (i.e. parent-adolescent relationships), and service members' perceived work-family impact (specifically work-related guilt and work-related enrichment). To examine these associations, a path analysis with secondary cross-sectional data was estimated using data from 228 Army families (each with an active-duty father, civilian mother, and adolescent offspring). The findings suggested that service members' perceptions of military-related stress and adolescents' relationship quality with both parents were related to service members' work-family impact, specifically work-related enrichment. Such associations highlight the importance of high-quality parent-adolescent relationships for active-duty fathers' work-family impact, which has implications for military families but, more broadly, for service members' readiness and retention.

Maralixibat Treatment Response in Alagille Syndrome is Associated with Improved Health-Related Quality of Life.

OBJECTIVE: The objective of this study was to assess the impact of treatment response to the ileal bile acid transporter inhibitor maralixibat on health-related quality of life (HRQoL) in children with Alagille syndrome. STUDY DESIGN: This analysis used data from the ICONIC trial, a phase 2 study with a 4-week double-blind, placebo-controlled, randomized drug withdrawal period in children with Alagille syndrome with moderate-to-severe pruritus. Clinically meaningful treatment response to maralixibat was defined a priori as a ≥1-point reduction in the Itch-Reported Outcome (Observer) score, from baseline to week 48. HRQoL was assessed using the Pediatric Quality of Life Inventory Generic Core, Family Impact, and Multidimensional Fatigue scale scores, which were collected via the caregiver. The minimal clinically important difference for HRQoL ranged from 4 to 5 points, depending on the scale. RESULTS: Twenty of the 27 patients (74%) included in this analysis achieved an Itch-Reported Outcome (Observer) treatment response at week 48. The mean (SD) change in Multidimensional Fatigue score was +25.8 (23.0) for responders vs -3.1 (19.8) for nonresponders (P = .03). Smaller and non-statistically significant mean changes were observed for the Pediatric Quality of Life Inventory Generic Core and Family Impact scores. Controlling for baseline Family Impact score, responders' Family Impact scores increased an average of 16.9 points over 48 weeks compared with non-responders (P = .05). Smaller and non-statistically significant point estimates were observed for the Pediatric Quality of Life Inventory Generic Core and Multidimensional Fatigue scores. CONCLUSION: The significant improvements in pruritus seen with maralixibat at week 48 of the ICONIC study are clinically meaningful and are associated with improved HRQoL. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02160782.

Oral health-related quality of life and associated factors among a sample from East China with severe early childhood caries: a cross-sectional study.

BACKGROUND: To investigate the oral health-related quality of life (OHRQoL) and associated factors among a sample from East China with severe early childhood caries (S-ECC). METHODS: A total of 316 children with S-ECC and their parents were recruited to participate in a cross-sectional study. Children were examined for caries status using criteria proposed by World Health Organization (WHO). The accompanying parent was required to provide demographic information and complete two validated questionnaires in Chinese: the early childhood oral health impact scale (ECOHIS) and the 5-item oral health impact profile (OHIP). RESULTS: The study had a 98.1% response rate. Finally, the data of 300 children and their parents were analyzed. Mothers cared for their children far more than fathers in the included family (78.7% mother, 21.3% father). The mean age of children was 4.1 ± 0.7 years, ranging from 3 to 5. The mean dmft score was 13.8 ± 3.8. Few (13.7%) children never had a toothache. ECOHIS scores ranged from 0 to 38, with a mean score of 16.2 ± 7.2. The mean OHIP score was 2.9 ± 2.7. The parental age, family income, residence, history of pain, the dmft scores and parents' OHIP showed associations with ECOHIS scores or domain scores (P < 0.05). The multiple regression analysis showed that the history of pain, accompanying parents' OHIP, and the dmft scores were mainly associated with ECOHIS and child impact (P < 0.05); parental age was associated with family impact (P = 0.024). CONCLUSIONS: The parent's OHRQoL was associated with the children's OHRQoL, indicating that policymakers and clinical practitioners should improve both children's and their parents' oral health. Furthermore, the caries severity and the history of dental pain impacted children's OHRQoL.

Measuring impact of augmentative and alternative communication interventions: adapting the family impact of assistive technology scale for augmentative and alternative communication (FIATS-AAC-No) for use in Norway.

Individuals who require augmentative and alternative communication (AAC) comprise a heterogeneous group, but all need follow-up to assure the appropriateness of implemented interventions. To enable this, outcome measures such as the Family Impact of Assistive Technology Scale for Augmentative and Alternative Communication (FIATS-AAC) may be used. However, instrument must be adapted to the language and culture in which they are to be used. The aim of the study was to therefore to explore the suitability of the Norwegian short-form version (FIATS-AAC-No) by investigating the reliability, validity, and perceived clinical usefulness. The study utilized a mixed-method design, including an online survey and two small group interviews. In total, 47 parents responded to the online survey. The online survey was comprised of three questionnaires, where FIATS-AAC-No was one of the questionnaires. Two group interviews, with two parents and two clinicians, were conducted. Findings show satisfactorily reliability, construct validity and content validity. The interviews revealed a need for specification of key concepts, that there are challenges involved in being parents of a child needing AAC, and that completing questionnaires was perceived as stressful by many parents. The clinicians viewed the FIATS-AAC-No as a potentially useful clinical tool and expressed that it brought to attention the need for follow-up parents have.

The Family Impact of Atopic Dermatitis in the Pediatric Population: Results from an International Cross-sectional Study.

OBJECTIVE: To evaluate the impact of atopic dermatitis on families of pediatric patients. STUDY DESIGN: This cross-sectional, web-based survey of children/adolescents (6 months to <18 years old) with atopic dermatitis and their parents and caregivers was conducted in 18 countries encompassing North America, Latin America, Europe, Middle East/Eurasia, and East Asia. Children and adolescents with atopic dermatitis and their parents and caregivers were identified by the International Study of Asthma and Allergies in Childhood criteria and ever being told by a physician that they had "eczema". Atopic dermatitis severity was assessed using the Patient-Oriented Eczema Measure and the Patient Global Assessment. Atopic dermatitis impact on families' lives was evaluated using the Dermatitis Family Impact questionnaire and stand-alone questions on hours of atopic dermatitis-related care (past week) and missed work days (past 4 weeks) owing to their child's atopic dermatitis. RESULTS: A total of 7465 pairs of pediatric participants with atopic dermatitis and their parents or caregivers were surveyed. Across age groups, the Dermatitis Family Impact questionnaire total score for all regions ranged from 7.1 to 8.6, 13.2 to 14.9, and 17.0 to 17.2 for Patient-Oriented Eczema Measure mild, moderate, and severe atopic dermatitis, respectively. Subscale scores showed that greater atopic dermatitis severity had a greater impact on all family life domains, including sleep and tiredness. No specific patterns or trends were observed across age groups. Time spent on childcare and missed work days increased with atopic dermatitis severity. CONCLUSIONS: Across pediatric age groups and geographic regions, greater atopic dermatitis severity was associated with a greater negative impact on physical, emotional, social, and economic components of family life.

Family ties: the impact of celiac disease on children and caregivers.

PURPOSE: To evaluate the impact of celiac disease (CD) and the gluten-free diet (GFD) on the health-related quality of life (HRQoL) in children with CD in the United States using validated measures. We hypothesize that CD negatively impacts the child and caregivers' HRQoL. METHODS: Participants included children with a confirmed diagnosis of CD and their caregivers (n = 246) seen in a CD multidisciplinary clinic. Caregivers completed the Pediatric Quality of Life (PedsQL) parent-proxy scale to report on their child's HRQoL and the Family Impact Module (FIM), which assesses the impact of caring for a child with a chronic illness. Their children completed the age-appropriate PedsQL. PedsQL and FIM results were compared to published data for children with gastroenterological conditions and a healthy cohort using non-parametric tests. RESULTS: Children with CD reported significantly lower HRQoL than reports from healthy controls across all PedsQL domains (P < 0.001, Cohen d = 0.8), and lower compared to children with other organic gastrointestinal conditions in Social Functioning (P < 0.001, Cohen d = 0.5) and overall Psychosocial Functioning (P < 0.001, Cohen d = 0.3) domains. Results from the caregiver's report on their own HRQoL were significantly worse than that reported by historical controls in the domains of Communication (P < 0.001, Cohen d = 0.3) and Worry (P < 0.001, Cohen d = 0.8), yet similar on all other domains. CONCLUSIONS: In our population, CD is associated with low HRQoL scores for both children and their caregivers. Screening children and families for HRQoL can identify patients and families in need of additional support in this higher-risk population.

The association between family impact and health-related quality of life of children with idiopathic central precocious puberty in Chongqing, China.

BACKGROUND: Idiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). The impacts of disease and treatment on families are also an important concern. This study aimed to assess the association between family impact and HRQoL of children with ICPP. METHODS: We conducted a case-control study in Chongqing, China. A case group of 134 children with ICPP aged 5-12 years and their caregivers was recruited from a children's hospital in Chongqing. A total of 210 gender- and age-matched subjects from two primary schools were selected as controls. PedsQLTM4.0 Generic Core Scales (GCS) and PedsQL™ Family Impact Module (FIM) were used in this study. RESULTS: Children with ICPP scored lower than controls in all HRQoL domains except physical functioning. In particular, the two groups were significantly different in emotional functioning scores (d = 0.414, P < 0.001). Compared with controls, ICPP families had lower scores in all dimensions of the FIM scale (d = 0.288-1.030, all P < 0.05). Factors associated with HRQoL of ICPP patients included: age of patients, type of medical treatment, employment status of caregivers, educational level of caregivers, parent HRQoL and family functioning (all P < 0.05). CONCLUSIONS: Children with ICPP demonstrated lower quality of life and greater family impact compared to healthy controls. In addition, less impact of disease on parent HRQoL and family functioning was associated with better HRQoL of ICPP patients, patients aged older, treated with drug combination, cared by employed or well-educated caregivers reported better HRQoL. Health care professionals should pay more attention to younger patients treated with GnRHa alone, and provide targeted interventions for caregivers depending on their demographic background to reduce family impact and thereby improve patient HRQoL.

Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting.

Purpose: To increase knowledge/awareness on family impact (FI) after acquired brain injury (ABI) in rehabilitation settings, it is essential to investigate the associations between patient-functioning and impact on families. This has been explored in hospital-based cohorts, but not in rehabilitation settings.Methods: A cross-sectional, multi-center study among parents of children/young adults (aged 5-24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL™Family-Impact-Module and PedsQL™generic-core-4.0 to assess FI and health-related quality of life (HRQoL). Univariate- and multivariable-regression analyses were performed to investigate associations between HRQoL/patient/injury/family-related factors and FI.Results: 246 families participated; patients' median age was 14 year (IQR 11-16), 65 had non-traumatic-brain-injury (nTBI) (26%), 127 were female. FI was found to be considerable (median FIM-score 71.9, IQR:60-85). Especially referral to rehabilitation >6 months after onset, diminished patients' mental/emotional health and HRQoL (child/family factors), and premorbid problems were associated with higher FI.Conclusions: In this rehabilitation cohort, pediatric ABI caused considerably higher FI than in hospital-based studies with referral to rehabilitation >6 months, diminished child/family factors and presence of premorbid problems increasing FI. Assessing and monitoring FI and its associated factors enables professionals to individualize treatment, psychoeducation, support and follow-up.

Family functioning in the families of paediatric heart transplant recipients prior to outpatient visits and procedures.

In a cross-sectional study, we assessed family functioning prior to outpatient visits and routine heart catheterisations in the families of paediatric heart transplant recipients. Caregivers rated higher short-term family functioning prior to outpatient visits, but not prior to catheterisations. This finding may indicate that family functioning benefits from the support provided during outpatient visits.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members.

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members' quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient's reported quality of life scores and their family members' mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study.

OBJECTIVE: To characterize and determine risk factors for key dimensions of well-being at hospital discharge in families of neonates with acute symptomatic seizures. STUDY DESIGN: This prospective, observational cohort study enrolled 144 parent-infant dyads among neonates with acute symptomatic seizures from 9 pediatric hospitals in the Neonatal Seizure Registry. One parent per family completed a discharge survey, which included measures of anxiety and depression, health-related quality of life, and impact on the family. Multivariable regression analyses adjusted for site were constructed to examine parent and infant characteristics associated with well-being. RESULTS: At discharge, 54% of parents reported symptoms of anxiety and 32% reported symptoms of depression. Parents of infants with hypoxic-ischemic encephalopathy reported more depression and worse quality of life than parents of infants with other seizure etiologies. Parental quality of life was also lower with greater infant age at discharge. A higher level of maternal education was associated with greater impact on the family. All these differences were medium to large effect sizes, ranging from 0.52 to 0.78. CONCLUSIONS: Symptoms of anxiety and depression are common in parents of infants with neonatal seizures, and several parent and infant characteristics are associated with poorer parental quality of life and family well-being. These findings are a call to action to improve mental health screening and services for parents of infants with neonatal seizures.

Family functioning in pediatric heart transplantation: Variables associated with poor outcomes.

Family functioning is integral in a child's life and is linked to quality of life in health as well as disease. This has been scarcely studied in pediatric orthotopic heart transplantation (pOHT). In this study, we evaluate demographic and clinical factors associated with family functioning in this patient population. Pediatric post-transplant families were recruited in an outpatient setting (n = 71). The PedsQL Family Impact Module was administered, along with the Parent and Adolescent Medication Barriers Scales (PMBS; AMBS) and the McArthur socioeconomic scale. Associations between clinical and demographic variables and scaled scores were evaluated. In our sample, patients with congenital heart disease, developmental delay, and enteral feeding had lower total impact (P = .026; P = .011; P = .008) and parent self-reported HRQL scores (P = .018; P = .012; P = .005). Patients with developmental delay and enteral feeding also had lower family functioning summary scores (P = .025; P = .031). Higher parent educational status was associated with lower total impact scores (P = .043). Higher PMBS scores demonstrated negative correlation with total impact (P < .001), parent self-reported HRQL (P < .001), and family functioning summary scores (P = .003). Multiple linear regression analysis identified developmental delay, parental education, and PMBS as independent variables associated with family functioning. Our study highlights important factors impacting family functioning in pOHT. Developmental delay, higher parental education, and PMBS were associated with poorer family functioning. Our findings emphasize the need for a multi-disciplinary approach including serial psychological assessment and interventions in the management of pOHT patients in order to optimize family functioning.

Healthcare access and adverse family impact among U.S. children ages 0-5 years by prematurity status.

BACKGROUND: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. METHODS: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cut-back or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). RESULTS: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cut-back or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cut-back or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cut-back or stop work, and parental aggravation among children born prematurely. CONCLUSIONS: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.

Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery.

BACKGROUND AND OBJECTIVES: Cardiac surgical interventions for children with trisomy 18 and trisomy 13 remain controversial, despite growing evidence that definitive cardiac repair prolongs survival. Understanding quality of life for survivors and their families therefore becomes crucial. Study objective was to generate a descriptive summary of parental perspectives on quality of life, family impact, functional status, and hopes for children with trisomy 18 and trisomy 13 who have undergone heart surgery. METHODS: A concurrent mixed method approach utilising PedsQL™ 4.0 Generic Core Parent Report for Toddlers or the PedsQL™ Infant Scale, PedsQL™ 2.0 Family Impact Module, Functional Status Scale, quality of life visual analogue scale, and narrative responses for 10 children whose families travelled out of state to access cardiac surgery denied to them in their home state due to genetic diagnoses. RESULTS: Parents rated their child's quality of life as 80/100, and their own quality of life as 78/100 using validated scales. Functional status was rated 11 by parents and 11.6 by providers (correlation 0.89). On quality of life visual analogue scale, all parents rated their child's quality of life as "high" with mean response 92.7/100. Parental hopes were informed by realistic perspective on prognosis while striving to ensure their children had access to reaching their full potential. Qualitative analysis revealed a profound sense of the child's relationality and valued life meaning. CONCLUSION: Understanding parental motivations and perceptions on the child's quality of life has potential to inform care teams in considering cardiac interventions for children with trisomy 18 and trisomy 13.

The experience of a recreational camp for families with a child or young person with acquired brain injury.

The Heads Together organisation provides a weekend camping programme for children with an acquired brain injury (ABI) and their families. Utilising a qualitative approach, this study explored family experiences of the Heads Together Camp (HTC) from the perspective of parents. Semi-structured interviews were conducted with 11 parents who had attended the camp. Thematic analysis identified six themes: ABI and the family; Apprehension and discomfort; Connections and community; Hope and perspective; Fun, relaxation and respite; and Family functioning. Families experienced initial feelings of apprehension at camp, which attenuated as connections developed between camp attendees. These connections were grounded in shared experiences of ABI and enabled families to become part of an accepting community, feel less alone and share information. The camp environment also facilitated fun and relaxation, provided families with hope and perspective, and led to improvements in family relationships. Overall, recreational camps may mitigate some stressors experienced by families affected by ABI. Camps could be used to support families by providing them with connections, fun and relaxation, a sense of normality and hope for the future. Thus, recreational camps may represent an effective allied support service for this population.

Family Impact of Child Oro-Facial Cleft.

OBJECTIVE: To describe the association between children's orofacial cleft (OFC) and families' quality of life (QoL), using the short-form Family Impact Scale questionnaire (FIS-SF). Also assessed were the psychometric properties of the FIS-SF, as well as whether certain demographic and clinical variables impacted the family. DESIGN: Observational cross-sectional study. SETTING: Tertiary care public children's hospital in New South Wales, Australia. PARTICIPANTS: Parents/caregivers of children with OFC. MAIN OUTCOME MEASURE(S): The short-form Family Impact Scale questionnaire. RESULTS: Two hundred and fourteen parents completed the FIS-SF. Excellent convergent validity was evident, but discriminant validity was weaker. Those children with velopharyngeal insufficiency/submucous cleft reported lower scores on the family/parental activity, and lower overall family impact scores than those with cleft lip (CL) or cleft palate (CP). Those with cleft lip and palate (CL/P) had poorer family/parental activity scores than those with CP. There were no systematic differences in FIS-SF scores by the child's age, gender, private health insurance, living location, the number of cleft-related operations, or whether a child had commenced orthodontic treatment. CONCLUSIONS: The FIS-SF is a valid and reliable measure for determining the impact that OFC has on family QoL. The impact of OFC on children's families differs according to cleft type.

Infant illness severity and family adjustment in the aftermath of NICU hospitalization.

Up to 15% of parents have an infant who will spend time in a neonatal intensive care unit (NICU). After discharge, parents may care for a medically fragile infant and worry about their development. The current study examined how infant illness severity is associated with family adjustment. Participants included parents with infants who had been discharged from the NICU 6 months to 3 years prior to study participation (N = 199). Via a Qualtrics online survey, parents reported their infants' medical history, parenting stress, family burden, couple functioning, and access to resources. Multivariable regression analyses revealed that more severe infant medical issues during hospitalization (e.g., longer length of stay and more medical devices) were associated with greater family burden, but not stress or couple functioning. Infant health issues following hospitalization (i.e., medical diagnosis and more medical specialists) were associated with greater stress, poorer couple functioning, and greater family burden. Less time for parents was associated with increased stress and poorer couple functioning. Surprisingly, parents of infants who were rehospitalized reported less stress and better couple functioning, but greater family burden. Family-focused interventions that incorporate psychoeducation about provider-patient communication, partner support, and self-care may be effective to prevent negative psychosocial sequelae among families.

Hasta un 15% de progenitores tiene un infante que pasará un tiempo en una Unidad de Cuidado Intensivo Neonatal (NICU). Después de la salida, los progenitores deben cuidar de un infante médicamente débil y preocuparse por su desarrollo. El presente estudio examinó cómo la severidad de la enfermedad del infante se asocia con la adaptabilidad familiar. Los participantes eran progenitores con infantes que habían salido de la Unidad de Cuidado Intensivo Neonatal entre 6 meses y 3 años antes de participar en el estudio (N = 199). Por medio de una encuesta electrónica tipo Qualtrics, los progenitores reportaron el historial médico de su infante, el estrés de la crianza, la carga familiar, el funcionamiento como pareja y el acceso a recursos. Los análisis de regresión de variables múltiples revelaron que asuntos médicos más severos del infante durante la hospitalización (v.g. período más largo de hospitalización, más aparatos médicos) se asociaban con mayor carga familiar, aunque no así con estrés o el funcionamiento como pareja. Los asuntos de salud infantil posteriores a la hospitalización (v.g. diagnóstico médico, más médicos especialistas) se asociaron con mayor estrés, un más pobre funcionamiento como pareja y mayor carga familiar. Menos tiempo para los progenitores se asoció con un aumento en el estrés y un más pobre funcionamiento como pareja. De modo sorprendente, los progenitores de infantes que habían sido hospitalizados otra vez reportaron menos estrés y mejor funcionamiento como pareja, pero mayor carga familiar. Las intervenciones con enfoque familiar que incorporan educación sicológica acerca de la comunicación entre proveedor y paciente, apoyo a la propia pareja y el cuidado propio pudieran ser eficaces para prevenir la secuela sicosocial entre familias.

Jusqu'à 15% des parents ont un bébé qui passera du temps en Unité Néonatale de Soins Intensifs. A la sortie de l'hôpital les parents peuvent se retrouver à prendre soin d'un bébé fragile du point de vue médical et s'inquiéter de son développement. Cette étude a examiné comment la sévérité de la maladie du bébé est liée à l'ajustement de la famille. Les participants ont inclu des parents avec des bébés étant sortis de l'Unité Néonatale de Soins Intensifs 6 mois à trois ans avant la participation à l'étude (N = 199). Au travers d'un questionnaire Qualtrics en ligne, les parents ont fait état de l'histoire médicale des bébés, du stress de parentage, du poids sur la famille, du fonctionnement du couple et de l'accès aux ressources. Des analyses de régression multivariables ont révélé que les problèmes médicaux du bébé durant l'hospitalisation les plus graves (i.e. durée plus longue du séjour, plus de dispositifs médicaux) étaient liés à un poids sur la famille plus fort, mais pas au stress ni n'affectait le fonctionnement du couple. Les problèmes de santé du bébé après l'hospitalisation (soit un diagnostic médical, plus de spécialistes médicaux) étaient liés à un stress plus élevé, à un fonctionnement du couple moins bon, et à un poids sur la famille plus fort. Moins de temps pour les parents était lié à un stress supplémentaire et à un fonctionnement du couple moins bon. Avec surprise, les parents de bébés qui étaient réhospitalisés ont fait état de moins de stress et d'un meilleur fonctionnement de couple, mais d'un poids plus fort sur la famille. Les interventions centrées sur la famille qui incorporent une psychoéducation sur la communication médecin-parent, le soutien du partenaire et le soin de soi peut s'avérer efficace afin d'éviter des séquelles psychosociales négatives chez les familles.

Quality of life in infants with atopic dermatitis and their families.

INTRODUCTION: Atopic dermatitis (AD) is the most common chronic inflammatory skin disease, with a significant effect on quality of life (QoL). AIM: To evaluate the impact of AD on QoL of Montenegrin infants and their parents and to identify predictors affecting their QoL. MATERIAL AND METHODS: The cross-sectional study was conducted between August 2017 and July 2018 and included 186 infants with AD aged 0-4 years and their parents. The severity of disease was measured by the Three-Item Severity (TIS) score, while QoL was assessed with the Infants' Dermatitis Quality of Life Index (IDQOL) and the Dermatitis Family Impact (DFI) questionnaire. RESULTS: The mean overall scores were 14.72 for IDQOL and 17.78 for DFI. The positive correlation was observed between AD severity and both the IDQOL and DFI scores (r = 0.61, p < 0.001 and r = 0.67, p < 0.001, respectively). The highest-scoring IDQOL items were "itching and scratching", and "child's mood". Poorer infants' QoL was associated with more serious AD (B = 2.56; 95% confidence interval (CI): 2.08-3.04), concomitant atopic disease (B = 3.86; 95% CI: 1.78-5.94), family history of atopic disease (B = 3.80; 95% CI: 1.84-5.77), older age of the child (B = 1.14; 95% CI: 0.20-2.07) and older age of the parent (B = 0.28; 95% CI: 0.04-0.53). Similarly, parents had poorer QoL if their infants had more severe AD (B = 2.56; 95% CI: 2.14-2.87), another atopic disease (B = 2.91; 95% CI: 0.99-4.84) or family history of atopic disease (B = 4.33; 95% CI: 2.57-6.09). CONCLUSIONS: Our results demonstrate that AD has a significant negative impact on infants' QoL as well as on QoL of their parents.

Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia.

PURPOSE: Congenital diaphragmatic hernia (CDH) survivors experience increased risk of medical and neurodevelopmental challenges. This study describes the health-related quality of life (HRQOL), special education utilization and the family impact among neonatal CDH survivors. METHODS: A single-center prospective cohort of CDH survivors born between 1995 and 2006 was followed. Parents completed the PedsQL HRQOL index and a Family Impact survey to assess the need for medical equipment, home health services, and special education and quantify the burden placed on the family by their child's medical needs. RESULTS: Parents of 32 survivors participated at a mean survivor age of 8 ± 4 years. Many survivors utilized medical equipment (62%), home health services (18%) and special education (28%). CDH survivor HRQOL (79 ± 17) did not differ significantly from that of healthy children (83 ± 15, p = 0.12). HRQOL was diminished among survivors who required special education (67 ± 8 vs 82 ± 3; p = 0.04) and those reporting increased Family Impact score (p = 0.001). CONCLUSION: Many CDH survivors continue to require home medical equipment and home health services at school age. Most survivors have normal parent-reported HRQOL; however, the need for special education and higher family impact of neonatal CDH correlates with decreased HRQOL.