Family Caregivers Of Children Research Articles

Psychosocial Factors Predicting Resilience in Family Caregivers of Children with Cancer: A Cross-Sectional Study.

Chronic diseases in childhood can affect the physical and mental health of patients and their families. The objective of this study was to identify the sociodemographic and psychosocial factors that predict resilience in family caregivers of children with cancer and to define whether there are differences in the levels of resilience derived from these sociodemographic variables. Three hundred and thirty family caregivers of children with cancer, with an average age of 32.6 years were interviewed. The caregivers responded to a battery of tests that included a questionnaire of sociodemographic variables, the Measuring Scale of Resilience, the Beck Depression Inventory, the Inventory of Quality of Life, the Beck Anxiety Inventory, an interview of caregiver burden and the World Health Organization Well-Being Index. The main findings indicate that family caregivers of children with cancer reported high levels of resilience, which were associated positively with quality of life, psychological well-being and years of study and associated negatively with depression, anxiety and caregiver burden. The variables that predicted resilience in families of children with cancer were quality of life, psychological well-being, depression and number of children. Family caregivers who were married and Catholic showed higher resilience scores. We conclude that being a caregiver in a family with children with cancer is associated with symptoms of anxiety and with depressive episodes. These issues can be overcome through family strength, well-being, quality of life and positive adaptation processes and mobilization of family resources.

The psychological impact on family caregivers of children and adolescents with sickle cell anemia

Abstract Sickle cell anemia represents an aversive context, placing the family in a situation of vulnerability. This study investigated the psychological impact of sickle cell anemia on family caregivers of children and adolescents with this disease. A research with a quantitative approach followed by a survey was carried out, with a non-probabilistic sample of 100 caregivers who answered the instruments for measuring family functioning, disease-related stress, coping, anxiety, and depression. Clinical and sociodemographic characteristics were obtained from medical records and specific protocols. Caregivers of children with late diagnosis presented high disengaged coping scores, and minimum depression; early diagnosis was associated with mild depression. Family functioning domain scores were lower in families with younger children. Regression analyses showed that primary control coping indicates lower depression scores, and involuntaryengagement is a predictor of depression/anxiety. This study contributes to the understanding of the relationship between psychological, clinical, and sociodemographic variables in the context of sickle cell anemia.

IMPACT study: measuring the impact of caregiving on families and healthcare professionals of children and adults living with mucopolysaccharidoses in Ireland.

Disease trajectories are often uncertain among individuals living with mucopolysaccharidoses (MPS) due to the progressive nature of the illness and the goal of care. This study investigated the impact on caregivers and care providers of children and adults living with MPS. The study used a cross-sectional design and a convenience sampling strategy which involved two sequential study components. The stage 1 quantitative component included three validated scales: the abbreviated World Health Organization Quality of Life (WHOQOL-BREF), the Paediatric Inventory for Parents (PIP) and the 14-item Resilience Scale (RS-14). The stage 2 qualitative component consisted of two focus groups with healthcare professionals (HCPs) (n = 9) working with children and adults living with MPS across three clinical sites in Ireland. Data were collected between November 2017 and July 2019. A total of 31 parents identified as caregivers participated in this study. The mean quality of life (QoL) score was 93.81, indicating a significantly high QoL. The PIP frequency total mean was 102.74 and difficulty mean 104.94. The mean score for the RS-14 was notably high, 81.42 out of a maximum of 98. The majority of the results showed high levels of concern for the future, with just under 50% finding themselves very often feeling scared that their child's condition will deteriorate or that their child will die and finding these thoughts very difficult. The healthcare professionals' (HCPs) perceptions were focused on the complexity of MPS, coping strategies, managing expectations and support services. The overall findings of the study reinforced the need for sustained and enhanced psychological support to ensure both families of children and adults living with MPS and the HCPs are supported in the continued delivery of quality patient care and outcomes. Subjective and objective measures from family caregivers and HCPs yield results that can decrease stress and improve psychological support. Impact of caregiving on families and healthcare professionals of children and adults living with mucopolysaccharidoses in Ireland Mucopolysaccharidoses (MPS) is a group of one of the many rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this genetic condition show no change at birth, but effects start to show in subsequent years as it is a progressive disease. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, multisystemic, restricted growth or mental and physical disabilities. Recent developments in treatments for some forms of MPS have dramatically changed the quality of life (QoL) for patients. Other forms of treatment are currently under investigation and development. This study aimed to provide a detailed and reliable evidence base on the impact of caregiving for patients living with MPS on family caregivers and healthcare providers. Paper questionnaires were completed by the family caregivers of children and adults living with MPS. These three questionnaires focused on measuring QoL, parental stress and anxiety, and resilience among these families. Two focus group interviews were carried out with healthcare professionals working with children and adults living with MPS across three clinical sites in Ireland.A total of 31 parents completed the questionnaires in this study, indicating a significantly high QoL and notably high resilience. The majority of the parental stress results were related to concern for the future, with just half of the families finding themselves very often scared that their child's condition will deteriorate or that their child will die and find these thoughts very difficult. The healthcare providers also spoke about the complexity of MPS, coping strategies, managing expectations and support services for the families of children and adults living with MPS. This study provided evidence for clinicians and policymakers to improve the availability of appropriate healthcare provisions for people living with MPS and their families.

Perceived discrimination and emotional distress among family caregivers of children with physical disabilities: The mediational role of affiliate stigma and self-efficacy.

The main objective of this research is to examine the consequences of perceived discrimination in family caregivers of people with physical disabilities. Through path analysis, we test the association between caregivers' perceived discrimination and their anxiety and depression and the mediating role that affiliate stigma and self-efficacy may play. We proposed a model that has not been tested previously in the literature on caregivers of people with physical disabilities. The sample includes 186 Spanish fathers (35%) or mothers (65%) raising children with physical disabilities. Descriptive statistics and Pearson's correlation coefficients were calculated and structural equation modeling was used to examine the mediating effect. Results show that caregivers' perceived discrimination is positively associated with their affiliate or internalized stigma that in turn is harmful to their anxiety and depression. However, caregivers' self-efficacy plays a mediating role in the relation between affiliate stigma and caregivers' anxiety and depression. These results may be useful for designing interventions to improve the psychological well-being of the parents of children with physical disabilities. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Resilience of family caregivers of children and adolescents in treatment of neoplasms and associated factors.

analyze the level of resilience of family caregivers of children and adolescents hospitalized for cancer treatment and associated factors. cross-sectional study, carried out in 2018, with 62 family caregivers in a university hospital in the state of Rio Grande do Sul, Brazil. The instruments CDRisc-10-Br, SRQ20, PSS-14 and WHOQOL-Bref were used to measure resilience, minor psychological disorders, stress, and quality of life, respectively. Inferential statistics were used. female caregivers, married, with one child and who practice some predominated religion. They were classified as having a moderate level of resilience (48.4%); with suspicion for minor psychological disorders (45%) and high level of stress (41%). In terms of quality of life, they were satisfied in the Physical, Psychological and Social Relations domains; and dissatisfied in the Environment domain. there were direct weak to moderate correlations between the level of resilience and quality of life and inversely with stress and minor psychological disorders.

Relationship between Psychological Well-Being and Coping Strategies among Family Caregivers of Children with Down syndrome

Background: Rearing a child with Down Syndrome requires use of effective coping strategies that may have a buffering effect on psychological well-being of family caregivers. Aim: This study aimed to assess the relationship between psychological well-being and coping strategies among family caregivers of children with Down syndrome. Design: A descriptive research design was utilized in this study. Setting: This study was carried out in the Genes Clinics of DS in the specialized clinics of the university pediatric hospital affiliated to Ain Shams University Hospitals. Subjects: A sample of 120 family caregivers of children with Down syndrome. The study tools were: 1) Interviewing Questionnaire, 2) Ryff’s Psychological well-being scale (1989) and 3) Brief-COPE inventory (Carver, 1997). The results: The study showed that family caregivers of children with DS combined between emotion-focused and problem focused coping strategies in managing burden of child caregiving and the most frequent used emotion focused coping strategies were acceptance and religion while the most frequent used problem-focused coping strategy was use of instrumental support. Concerning to psychological well-being, near two thirds of family caregivers of children with DS had psychological well-being less than usual. Conclusions: There was a negative significant correlation between level of psychological well-being and emotion-focused coping strategies except for use of emotional support, acceptance, self distraction, venting, humor and religion. Meanwhile, there was a positive significant correlation between level of psychological well-being and problem-focused coping strategies except for positive reframing. Recommendations: Future research to assess factors that may influence role of caregiving and different challenges faced by family caregivers in rearing different aged children with DS.

Predictors of Quality of Life among Parents of Children with Chronic Diseases: A Cross-Sectional Study.

Quality of life (QOL) is a key aspect of the health care process for children with chronic diseases and their families. Although clinical evidence regarding the impact of chronic disease on children exists, few studies have evaluated the effects of the interaction between sociodemographic and psychosocial factors on the family caregiver’s QOL, indicating a significant gap in the research literature. The present study aimed to identify the predictors of the QOL of parents of children with chronic diseases. Three parental sociodemographic predictors (age, schooling, and family income) and four psychosocial predictors (family functioning, social support, depression, and resilience) were examined. In this cross-sectional study, 416 parents of children with chronic diseases who were hospitalized at a National Institute of Health in Mexico City were interviewed. The participants completed a sociodemographic variables questionnaire (Q-SV) designed for research on family caregivers of children with chronic disease. The predicted variable was assessed through the World Health Organization Quality of Life Questionnaire. The four psychosocial predictors were assessed through the Family Functioning Scale, Social Support Networks Scale, Beck Depression Inventory, and Measurement Scale of Resilience. The regression model explained 42% of the variance in parents’ QOL. The predictors with positive weights included age, schooling, monthly family income, family functioning, social support networks, and parental resilience. The predictors with negative weights included depression. These findings suggest that strong social relationships, a positive family environment, family cohesion, personal resilience, low levels of depression, and a family income twice the minimum wage are variables associated with better parental QOL.

The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study

BackgroundA family caregiver is defined as a person who has a significant emotional bond with the patient; this caregiver is a family member who is a part of the patient’s family life cycle; offers emotional-expressive, instrumental, and tangible support; and provides assistance and comprehensive care during the chronic illness, acute illness, or disability of a child, adult, or elderly person. The objectives of this study were to identify the psychosocial profiles of family caregivers of children with chronic diseases and to establish the relationship between these profiles and sociodemographic variables.MethodsA cross-sectional study was conducted involving 401 family caregivers of children with chronic diseases at the National Institute of Health in Mexico City. The participants responded to the Sociodemographic Variables Questionnaire (Q-SV) for research on family caregivers of children with chronic disease and a battery of 7 instruments that examined anxiety, caregiver burden, family support, depression, resilience, parental stress, and the World Health Organization Well-Being Index.ResultsA hierarchical cluster analysis and its confirmation through a nonhierarchical cluster analysis confirmed two profiles of caregivers of pediatric patients with chronic diseases. Profile 1, called Vulnerability of family caregivers, is characterized by high levels of anxiety, depression, parental stress and caregiver burden, accompanied by low levels of family support, resilience, and well-being. Profile 2, called Adversity of family caregivers, shows an inverse pattern, with high levels of family support, resilience, and well-being and low levels of anxiety, depression, parental stress and caregiver burden. The sociodemographic characteristics are similar for both profiles, with the exception of the caregiver’s family type. Profile 1 shows more single-parent caregivers, while profile 2 includes more caregivers with a nuclear family. However, the type of family did not reach significance for predicting the caregiver’s profile in a bivariate logistic regression model.ConclusionsThe psychosocial profile of family caregivers of children with chronic diseases can be structured according to their psychosocial characteristics. Although no causal factors were detected that define criteria for belonging to one or another profile, the characteristics identified for each indicate the need for specific and differentiated intervention strategies for families facing adversity, risk and vulnerability during a child’s disease.

Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers

BackgroundWolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being.ResultsThe sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents’ QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support.ConclusionsWHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles.

The Early Positive Approaches to Support (E-PAtS) study: study protocol for a feasibility cluster randomised controlled trial of a group programme (E-PAtS) for family caregivers of young children with intellectual disability

BackgroundChildren with intellectual disability have an IQ < 70, associated deficits in adaptive skills and are at increased risk of having clinically concerning levels of behaviour problems. In addition, parents of children with intellectual disability are likely to report high levels of mental health and other psychological problems. The Early Positive Approaches to Support (E-PAtS) programme for family caregivers of young children (5 years and under) with intellectual and developmental disabilities is a group-based intervention which aims to enhance parental psychosocial wellbeing and service access and support positive development for children. The aim of this study is to assess the feasibility of delivering E-PAtS to family caregivers of children with intellectual disability by community parenting support service provider organisations. The study will inform a potential, definitive RCT of the effectiveness and cost-effectiveness of E-PAtS.MethodsThis study is a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to 2 family caregivers will be recruited from 64 families with a child (18 months to 5 years) with intellectual disability at research sites in the UK. Participating families will be allocated to intervention: control on a 1:1 basis; intervention families will be offered the E-PAtS programme immediately, continuing to receive usual practice, and control participants will be offered the opportunity to attend the E-PAtS programme at the end of the follow-up period and will continue to receive usual practice. Data will be collected at baseline, 3 months post-randomisation and 12 months post-randomisation. The primary aim is to assess feasibility via the assessment of: recruitment of service provider organisations; participant recruitment; randomisation; retention; intervention adherence; intervention fidelity and the views of participants, intervention facilitators and service provider organisations regarding intervention delivery and study processes. The secondary aim is preliminary evaluation of a range of established outcome measures for individual family members, subsystem relationships and overall family functioning, plus additional health economic outcomes for inclusion in a future definitive trial.DiscussionThe results of this study will inform a potential future definitive trial, to evaluate the effectiveness and cost-effectiveness of the E-PAtS intervention to improve parental psychosocial wellbeing. Such a trial would have significant scientific impact internationally in the intellectual disability field.Trial registrationISRCTN70419473

DA SUSPEITA AO DIAGNÓSTICO DE CÂNCER INFANTOJUVENIL: A EXPERIÊNCIA DE FAMILIARES EM SERVIÇOS DE SAÚDE

Este trabalho buscou compreender a experiência de familiares de crianças e adolescentes com câncer, nos serviços de saúde, desde os primeiros sinais e sintomas da doença até a comunicação do diagnóstico. Trata-se de um estudo qualitativo realizado com 20 cuidadores familiares de crianças e adolescentes que estavam em tratamento oncológico em um hospital público da Paraíba. Recorreu-se à entrevista semiestruturada para apreensão dos dados e à análise de conteúdo, do tipo temático, para a organização e análise dos resultados. O processo de análise permitiu a construção de três categorias temáticas: Em busca de um diagnóstico; Diagnóstico; e Mudanças no sistema familiar. Recorrer a vários serviços de saúde, esperar pelo diagnóstico e, por vezes, receber diagnósticos errados causaram sofrimento na família, que geralmente sentia-se negligenciada e impotente. Apesar de grande parte dos cuidadores avaliar a comunicação do diagnóstico como adequada, as reações dos cuidadores expressaram o choque surgido pela notícia. Nesse cenário, identificou-se uma maior união na maioria das famílias e mudanças de rotina e papéis, no sentido de adaptação à adversidade inesperada. Ressalta-se a importância de repensar as práticas de cuidado na rede de assistência oncológica, assegurando uma postura de acolhimento e vínculo, a partir da ótica da integralidade.

101 Screening for Psychosocial Risk in Families of Children with Medical Complexity (CMC)

Abstract Background Children with medical complexity (CMC) are defined by their medical fragility, dependence on assistive technology and substantial care needs. Family caregivers of CMC have unique challenges, such as prolonged hospitalizations and poor care coordination, which result in extensive caregiver stress. There is a great need to quantify the level of psychosocial stress and resilience in these caregivers to allow for appropriate allocation of health care resources. The Psychosocial Assessment Tool (PAT) is a brief parent-reported screening tool for measuring psychosocial risk in caregivers of pediatric populations. This is the first study to use the PAT in children with medical complexity. Objectives To quantify psychosocial risk in family caregivers of children diagnosed with medical complexity. To identify predictors of caregiver distress based on their sociodemographic factors. It was hypothesized that the extensive health demands of CMC will result in high amounts of chronic, ongoing caregiver distress relative to the previously studied pediatric populations. Design/Methods This cross-sectional study was conducted at The Hospital for Sick Children, Toronto, Canada. Family caregivers of children with medical complexity completed the PAT questionnaires during regularly scheduled Long-Term Ventilation and Complex Care clinic visits. Based on the overall PAT scores, caregivers were stratified as “Universal” low risk (&amp;lt;1.0), “Targeted” intermediate risk (1.0 to 1.9), or “Clinical” high risk (≥2.0). Multiple linear regression analysis was performed to examine the effect of sociodemographic variables and illness severity on total PAT scores. Comparisons with previous pediatric studies were made using T-test statistics. Results 136 [103 females (76%)] family caregivers completed the study. Mean PAT score was 1.17 (SD = 0.740). 61 (44.85%) caregivers were classified as Universal risk, 60 (44.12%) as Targeted risk, and 15 (11.03%) as Clinical risk. Compared to previously studied pediatric populations, our CMC have the second-highest overall PAT scores, which are also substantially weighted towards the higher risk categories (Table 1). Multiple linear regression analysis demonstrated that subjective report of financial hardship by caregivers is a significant predictor of total PAT scores (p &amp;lt; 0.05). Conclusion Family caregivers of children with medical complexity report PAT scores amongst the highest of all pediatric populations. These caregivers experience significant psychosocial distress, demonstrated by larger proportions of caregivers in the Targeted and Clinical risk categories. Therefore, psychosocial interventions including financial assistance are urgently needed in this population.

Translation, cross-cultural adaptation, and validation of the Leuven Knowledge Questionnaire for congenital heart disease instrument into Brazilian Portuguese

ObjectiveTo translate the Leuven Knowledge Questionnaire for Congenital Heart Disease into Brazilian Portuguese and to validate its psychometric properties with parents and family caregivers of children with congenital heart disease. MethodThis was a six-step methodological study, including the translation, synthesis, back-translation, evaluation of the version translated by the committee of experts, pre-testing, and validation, for which two pilot tests were used including the think-aloud protocol. The content validity index and the frequency of socioeconomic data were calculated in a statistical programming environment. ResultsIn content validation, the instrument showed good applicability among experts, with average content validity index of 0.8–1, while kappa agreement analysis was between 0.76 to 1; both results were considered adequate for validation. ConclusionsThe results suggest reliability among the evaluators, indicating the instrument’s accuracy and the possibility of using it to assess the knowledge of parents and family caregivers about congenital heart disease.

Perceived discrimination and self-esteem among family caregivers of children with autism spectrum disorders (ASD) and children with intellectual disabilities (ID) in Spain: The mediational role of affiliate stigma and social support

BackgroundPeople with autism spectrum disorders (ASD) and people with intellectual disabilities (ID) are stigmatized, and therefore discriminated against worldwide and, on many occasions, this stigma and discrimination are expanded to include their family caregivers. The main objective of this research was to examine the consequences of perceived discrimination on family caregivers of children with ASD and children with ID. MethodsThe sample consisted of 109 Spanish caregivers of children with ASD and 83 caregivers of children with ID. They completed four questionnaires: Multidimensional Perceived Discrimination Scale, Affiliate Stigma Scale, Social Support Questionnaire and Rosenberg Self-Esteem Scale. ResultsUsing path analysis, we found support for a model in which personal discrimination perceived by caregivers was positively associated with affiliate stigma, which, in turn, was negatively related to caregivers’ self-esteem. The model also shows the total mediational role of affiliate stigma in the association between perceived discrimination and self-esteem and the partial mediational role that social support plays in the association between perceived discrimination and caregivers’ self-esteem. ConclusionsCaregivers’ perceived discrimination negatively influences caregivers’ self-esteem, but this relationship is mediated by both affiliate stigma (totally) and social support (partially). These results have theoretical and practical implications and may contribute to improving the quality of life of parents of children with ASD and ID that in turn would result in an improvement of the quality of life of their children.

Screening for caregiver psychosocial risk in children with medical complexity: a cross-sectional study

ObjectiveTo quantify psychosocial risk in family caregivers of children with medical complexity using the Psychosocial Assessment Tool (PAT) and to investigate potential contributing sociodemographic factors.DesignCross-sectional study.SettingFamily caregivers completed questionnaires during...

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination.

To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n=136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination. In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93). CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.

The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study.

To explore the day-to-day experiences of family caregivers who are caring for children with Osteogenesis Imperfecta (OI). Osteogenesis Imperfecta is a rare genetic condition known to cause bone fragility. Family caregivers of children with OI play an important role in helping these children live well at home. A qualitative descriptive design was used. A qualitative descriptive study was conducted in accordance with the COREQ guidelines. Adult family caregivers (n=18) of children with OI were recruited from a university-affiliated, paediatric orthopaedic hospital in Montreal, Canada. Individual interviews were conducted, transcribed verbatim and inductively thematically analysed. Osteogenesis Imperfecta family caregiving entailed: (a) managing regular day-to-day caregiving activities, including morning routines, evening routines and the facilitation of their child's mobilisation; (b) coping with periods that made the caregiving routine more challenging, such as fractures, surgeries and pain; and (c) devising long-term strategies to support day-to-day care, such as managing the environment, accessing medical and school resources, and coordinating care and respite. The day-to-day routine of caring for a child with OI may be disrupted by challenging periods and improved by long-term strategies developed to ease day-to-day care. These strategies suggest future directions for clinicians and policymakers to improve health services and caregiver well-being. Clinical, policy and research endeavours need to incorporate new interventions to support the needs of family caregivers. These recommendations may be relevant to other clinicians and policymakers working with families living with rare and chronic physical conditions.

Brief version of the coping health inventory for parents (CHIP) among family caregivers of children with chronic diseases

BackgroundThe Coping Health Inventory for Parents (CHIP) has demonstrated good psychometric properties in several language forms and has been used to assess the coping behaviors of families facing disease. However, the CHIP has not been validated in Mexico among families of children with chronic conditions, where it could be useful for research and intervention. The objectives of this instrumental study were to obtain a version of the CHIP for the Spanish language in Mexico, establish the factor structure of the Mexican version of the CHIP, probe its internal consistency reliability, and assess its concurrent construct validity.MethodsA nonprobability sample of 405 family caregivers of children with chronic diseases responded to a battery of measurement instruments that included the CHIP, the Beck Anxiety Inventory, and the Beck Depression Inventory. The sample was randomly divided into two parts. In one subsample (190 participants), an exploratory factor analysis was performed using a principal component analysis and oblique rotation. In the second subsample (215 participants), a confirmatory factor analysis was performed using maximum likelihood estimation.ResultsThe scale was reduced to 16 items (CHIP-16) with factorial loads greater than .50. The empirical criteria used to determine the number of factors converged on the following five factors: belief and trust (McDonald ω = .85), spouse/partner relationship (ω = .79), home care (ω = .77), family involvement (ω = .75), and security/stability (ω = .79). The overall internal consistency was good (ω = .88). The five-factor model showed acceptable fit indices and high parsimony. The mean CHIP-16 scores and the Spouse/partner relationship scores among the caregivers with anxiety were greater than those among the caregivers without anxiety. The mean home-care scores among the women were greater than those among men.ConclusionsThe 16-item version of the CHIP showed good internal consistency and construct validity; thus, the CHIP-16 is a useful instrument for measuring and assessing coping in family caregivers of children with chronic diseases.

Psychological and Socioeconomic Burdens Faced by Family Caregivers of Children With Asthma: An Integrative Review.

Asthma affects nearly 1 in every 12 children in the United States. Caring for a child with asthma poses significant challenges for the parent or caregiver. The purpose of this integrative review was to identify the psychological and socioeconomic burdens faced by family caregivers of children with asthma. An integrative review was conducted to review and appraise 80 studies. Psychosocial burdens included decreased mental health, quality of life, sleep, family stress, educational deficits, cultural and health disparities, and health care communication challenges. Socioeconomic burdens included poor access to care, as well as work and financial challenges. Studies demonstrated a link between family caregiver health and child health outcomes. Facilitators included education and empowerment, social support, and use of technology. As the family caregiver's health directly affects the asthmatic child's health, addressing the burdens of family caregivers should be a key consideration in pediatric asthma care.

Perceptions of Inclusive Education in Mexico City: An Exploratory Study

ABSTRACT Research on inclusive education (IE) documents benefits for both students with disabilities and students without disabilities. Internationally, IE is frequently aligned with the Salamanca Statement and the United Nations Convention on the Rights of Persons with Disabilities. The Salamanca Statement affirms ‘the right to education of every individual … regardless of individual differences.’ IE in Mexico has a brief and turbulent history. Of the 15% of students in Mexico who have a disability, only 2.85% receive IE. In addition, research on IE in Mexico is sparse. This exploratory study investigates the perspectives regarding IE among educators and family caregivers of children with and without disabilities schools in Mexico City, Mexico. Results show a prevalent support for IE among parents and teachers. Implications for policy, practice, and research are discussed.