Family Caregivers Of Children Research Articles

Stress in Family Caregivers of Children with Chronic Health Conditions: A Case–Control Study

Objectives: This study analyzed the stress experienced by family caregivers of children with special healthcare needs and identified associated factors. Methods: A case–control study was conducted with the “cases” being caregivers of children with chronic conditions and the “controls” being caregivers of healthy children. Recruitment was carried out via social media and complemented by snowball sampling. A sociodemographic questionnaire and the Perceived Stress Scale were applied, with four saliva samples collected in one day (at 8:00 am, 30 min later, and 4 and 12 h later). The Area Under the Curve for total daily cortisol production was calculated using the log-trapezoidal method. The Wilcoxon test and repeated-measures ANOVA were used for statistical analysis. Results: In total, 100 caregivers participated, with 50 in the “case” group and 50 in the “control” group. Significant differences in stress scores and salivary cortisol levels were observed between the groups, with the other variables constant. In both groups, cortisol levels followed a typical circadian pattern. Family income was associated with perceived stress. Caregiver age significantly explained perceived stress (p = 0.0098) and total cortisol production. Caregiver occupation also influenced cortisol results. Conclusions: Caregivers of children with chronic conditions showed higher perceived stress and lower cortisol production compared to those of healthy children. Family income, occupation, and caregiver age were associated with stress.

Hospital Discharge Plan in Family Caregivers of Children with Coronary Artery Aneurysm in Kawasaki Disease: A Review

Objective: The study reviews status, main time nodes and hospital discharge services for family caregivers of children with Kawasaki disease complicated by coronary artery aneurysm to provide references for the development of hospital discharge preparation services for medical personnel and patients. Background: CAL of Kawasaki disease is the main cause of acquired heart disease in children, but there is not enough research on the readiness for hospital discharge. Design: Systematic review of observational and interventional studies.

Assessment of Burden on Family Caregivers of Children With Sickle Cell Anemia in Al Madinah Al Munawwarah, Saudi Arabia.

Background Sickle cell anemia (SCA) results in various complications, necessitating continuous daily care and placing burdens on caregivers. Objectives This study aims to assess the burden on family caregivers of children with SCA and its associated factors. Materials and methods This analytical cross-sectional study was conducted in Madinah City, Saudi Arabia. We included family caregivers of children with SCA who were registered and treated at the Maternity and Child Hospital in King Salman Medical City. Data were collected from all registered files of children who received treatment for SCA. Data from participants was obtained using the validated Arabic version of the Zarit Burden Interview (ZBI). Descriptive statistics, chi-square tests, independent sample t-tests, and multivariate regression analysis were used in the statistical analysis. Results Overall, 124 caregivers participated out of 166 (response rate: 74.7%), among which 83 (66.9%) were fathers, 72 (58.1%) were aged ≥40 years, 96 (77.4%) held Saudi nationality, and 62 (50%) had a monthly income of <5000 SAR. The average daily caregiving hours were 5±4 hours, and 30 (24.2%) of children were diagnosed with associated physical or psychological diseases. The Zarit Burden Interview score indicated that 45 (36.3%) of caregivers reported no burden, whereas 51 (41.1%), 22 (17.7%), and 6 (4.8%) reported mild, moderate, and severe burden, respectively. Factors contributing to the burden included being a mother, low financial resources, non-Saudi nationality, children diagnosed with associated physical or psychological diseases, and caregiving hours. Conclusions The burden on SCA caregivers was higher for caregivers who were mothers, non-Saudis, those with lower income, and children with physical or psychological diseases, as well as more caregiving hours. Enhancing the overall well-being of families affected by the SCA burden involves creating targeted interventions and comprehensive support programs.

Quality of Life of the Family Caregivers of Children with the Cerebral Palsy and its Determinants: A Study from India

abstract Introduction: The responsibility of caring for a child with cerebral palsy (CP) at home can be challenging to the caregiver’s and children’s quality of life (QoL). This study was designed to assess the QoL and its determinants amongst family caregivers of children with CP. Materials and Methods: A study was conducted in a Tertiary Care Hospital in Yavatmal, Maharashtra, from March to May 2021, involving 126 participants selected through systematic random sampling. QoL was assessed using the World Health Organization QoL Brief Version scale. The data were analyzed using the statistical software, Epi Info Version 7.2. Results: The mean ± standard deviation of the overall QoL of family caregivers of CP children was 66.7 ± 1.44. The study found a significant association of QoL with the age of the caregiver, residence, education, socio-economic class, total number of children, health insurance and accessibility of services. Conclusion: More than half of the study participants exhibited low overall, physical, social and environmental QoL, influenced by various determinants.

Effect of Nursing Intervention Program on Psychosocial Problems among Family Caregivers of Children with Autism Spectrum Disorder

Effect of Nursing Intervention Program on Psychosocial Problems among Family Caregivers of Children with Autism Spectrum Disorder

Relationship between Compassion Fatigue and Optimism among Family Caregivers of Children with Autism

Relationship between Compassion Fatigue and Optimism among Family Caregivers of Children with Autism

Caring for the caregivers: A cross-sectional study of the burden experienced by family caregivers of children with cancer in South Gujarat

Caring for the caregivers: A cross-sectional study of the burden experienced by family caregivers of children with cancer in South Gujarat

Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study

BackgroundGlobally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID’s physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa.MethodsThis qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers.ResultsThe findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services.ConclusionsGiven the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.

Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU.

Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their child's PICU care to explore ways parents make meaning in relation to these stressors. This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents' psychosocial well-being around the time of their child's PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week. Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4-11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36-42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child. Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI.

Parental Stress among Family Caregivers of Children with Autism in a Teaching Hospital

Parenting is a journey that may bring joy, happiness, challenges, and frustration. However, raising children with autism with unpredictable behavior may elevate parental stress among parents and family caregivers. Objective: The study aims to assess parental stress among family caregivers of children with autism in a teaching hospital. Methods:This quantitative cross-sectional study was conducted at Hospital Al-Sultan Abdullah (HASA), University Technology MARA(UiTM), using a convenient sampling technique with a total sample size of 110 parents and family caregivers of children with autism (n= 110). An online questionnaire consisting of the Parental Stress Scale (PSS) and the Childhood Autism Spectrum Test (CAST) was used in this study to assess the level of parental stress and identify the severity of probable autistic behavior. Results:The finding shows that 75.5% of the participants were female and 94.5% were Malay. Most autistic children were male (63.6%), and most children (n= 81, 73.6%) had severe autistic behavior. However, 82.7% of participants reported low parental stress (mean = 34.41±13.06). Caregivers were found to have higher stress levels t(108) = -2.16; p=0.033). Besides, there was no significant association between the level of parental stress and the severity of autism (r=0.035, p=0.715). Conclusion:Special intervention is needed for the caregiver to improve stress management strategies by involving health care professionals for counseling and assistance to address the effects of stress. Alarger sample size is recommended for future research to enhance external validity.

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

ObjectiveExamine the longitudinal association between family experiences of care coordination (FECC) and health-related quality of life (HR-QOL) for family caregivers of children with medical complexity (CMC). MethodsA longitudinal survey of family caregivers of CMC was completed between July 2018 and June 2020. Baseline data were collected at initial contact with a regional complex care center; follow-up data were collected 12 to 16 months later. Assessed receipt of care coordination and caregiver HR-QOL via FECC questionnaire and Center for Disease Control’s HR-QOL-14 measure, respectively. Baseline and follow-up results were compared via McNemar’s and Wilcoxon signed-rank tests. Relationships between changes in FECC and changes in HR-QOL were examined using multivariable logistic regression. ResultsOf 185 eligible, 136 caregivers enrolled and completed baseline surveys (74%) and 103 (76% initial sample) follow-up surveys. Caregivers reported significant improvements in 8 of 9 FECC measures after 1 year of care within a complex care center (all P < .05). In contrast, caregiver HR-QOL (general health status, unhealthy days, symptom days) remained stable over the study period (all P > .05) except for monthly days of poor sleep (baseline vs follow-up median; 16 vs 15 [P = .05]). At both timepoints, >20% participants rated their general health status as fair-to-poor, and >50% reported frequent poor sleep and fatigue. No significant associations were observed between changes in FECC and changes in HR-QOL. ConclusionsAfter receiving 1 year of care through a complex care center, CMC family caregivers report improvement in care coordination but not in HR-QOL. Caregivers’ continued mentally unhealthy days and negative mental symptom days highlight the need for a directed intervention.

Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment.

Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences. To examine how parents and family caregivers of children with SNI navigate stress during PICU admissions. This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated. Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents. Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times.

Effect of counselling intervention on stress and expressed emotions among family caregivers of children with autism.

Parenting a child with autism represents an extraordinary challenge for families, resulting in prominent levels of stress and burden that subsequently affect their expressed emotions. This study aimed to evaluate the effect of counseling intervention on stress and expressed emotions among family caregivers of children with autism. The research used a pre-post interventional design, to evaluate 40 family caregivers of children with autism. The interviewing questionnaire assessed socio-demographic data, expressed emotions, and parenting stress, revealing that 57.5% of the evaluated family caregivers had severe stress pre-counseling, compared to 25% post-counseling intervention. Additionally, 80% of them had elevated levels of expressed emotions pre-counseling, compared to 32.5% during the post-counseling intervention. Most family caregivers of children with autism experienced significant levels of expressed emotions, and over half of them had severe levels of stress. However, these levels decreased following the implementation of the counseling interventions. Furthermore, there were highly statistically significant correlations between the total levels of expressed emotions and total stress levels among family caregivers before and after the implementation of the counseling intervention.

Anxiety, Depression, Quality of Life, and Family Support Among Family Caregivers of Children with Disabilities.

To investigate the family support, anxiety, depression, health-related quality of life (HRQoL), and their associations among parents and grandparents of children with disabilities. This is a cross-sectional study and a total of 327 family caregivers were included. Chi-square test, Mann-Whitney U-test, and two independent t-test were used to identify the intergenerational differences in sociodemographic characteristics, received family support, anxiety, depression, and HRQoL. Eight generalized linear models were developed to examine the associations in both generations. Parents and grandparents were most in need of rehabilitation and financial support, but both populations received the least amount of financial support. 33.6% and 36.1% of family caregivers had the risk of anxiety and depression and found no significant intergenerational differences. As for HRQoL, intergenerational differences were found in the physical component score, but not found in the mental component score. Among parents, childcare support of respite care and household tasks assistance was negatively associated with their depression (p<0.05), professional support of appropriate surgery for children (p<0.05) and psychological support from professional psychologists (p<0.01) were negatively associated with their anxiety and depression, psychological support from relatives and friends was negatively associated with their depression (p<0.05) whereas was positively associated with their mental HRQoL (p<0.01). As for grandparents, financial support for daily living expenses was negatively associated with depression (p<0.05), and psychological support from families was negatively associated with depression (p<0.05) whereas was positively associated with mental HRQoL (p<0.05). However, no relationship was found between family support and anxiety among grandparents. Notably, no association was found between family support and physical HRQoL among both populations. Both parents and grandparents had high risks of anxiety, depression and low levels of mental HRQoL. To efficiently improve psychological health, care providers and policymakers may consider intergenerational differences and provide targeted family support.

Innovative communication approaches for initializing pediatric palliative care: perspectives of family caregivers and treating specialists

BackgroundEffective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation.MethodsThis was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis.ResultsIn total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report.ConclusionsOur study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital.

Depression and Associated Factors among Family Caregivers of Children with Disabilities: Analysis of Intergenerational Differences.

Family caregivers of children with disabilities might face high risks of depression, whereas the existing literature focused more on parents neglecting grandparents. This study investigated 380 parents and 108 grandparents of children with disabilities to identify depression and associated factors. Descriptive statistics, Chi-square test, Mann-Whitney U test, and multivariable logistic regression were performed to describe the participants' characteristics and risks of depression and identify significant factors. Results showed that parents (35.5%) had higher risks of depression than grandparents (32.4%), but statistical differences were not found. Children's sleep problems (AOR = 1.751, 95%CI = 1.019, 3.008), harmonious family relationships (AOR = 0.694, 95%CI = 0.569, 0.846), and better barrier-free construction (AOR = 0.742, 95%CI = 0.568, 0.970) were significantly associated with depression among parents. As for grandparents, higher education (AOR = 4.108, 95%CI = 1.526, 11.057) and caring for children who experience frequent mood swings (AOR = 2.242, 95%CI = 1.161, 4.329) were associated with higher risks of depression. Further, house ownership (AOR = 0.167, 95%CI = 0.031, 0.887), higher family cohesion (AOR = 0.545, 95%CI = 0.297, 1.000), and better barrier-free construction (AOR = 0.401, 95%CI = 0.185, 0.869) were associated with lower odds of depression. Therefore, both parents and grandparents of children with disabilities had high risks of depression and thus required urgent attention. Healthcare providers and policymakers should develop and implement interventions considering intergenerational differences to reach optimal efficiency.

Lack of freedom predicted poor self-reported health among family caregivers of children with disabilities during the COVID-19 pandemic in Europe.

We aim to assess the effects of the COVID-19 pandemic on self-reported health and quality of life among family caregivers of children with disabilities across Europe. Cross-sectional study. Data from the survey by the Eurocarers and IRCCS-INRCA were used. The data were collected between November 2020 and March 2021 from 16 European countries. Data analysis was done using regression analysis to identify family caregivers' self-reported health and well-being predictors. This study included 289 caregivers. The mean age of children was 12 years. Their family caregiver's mean age was 44, and they were mainly women. Experience of lack of freedom predicted family caregivers' poor self-reported health and quality of life. Children's interrupted health and social services also predicted family caregivers' poor self-reported mental well-being. Longitudinal evidence on the pandemic's effects and a diverse view of family caregivers of children with disabilities are needed to plan effective post-pandemic health services and nursing practice. No Patient or Public Contribution.

Factors associated with caregiver burden among family caregivers of children with cerebral palsy: a systematic review

ObjectivesTo identify caregiver and children factors associated with caregiver burden on primary caregivers of children with cerebral palsy (CP).DesignSystematic reviewData sourcesSeven electronic databases, including PubMed, Cochrane Library, Scopus, PsycINFO, Web...

Medication management strategies by family caregivers of children with special healthcare needs.

Little is known about the strategies utilized by family caregivers managing medications for their children with special healthcare needs (CSHCN), those who require higher than normal care due to their multifaceted healthcare needs. Medication management strategies are a set of methods or techniques developed or adapted by caregivers to overcome medication-related barriers and ensure successful therapeutic outcomes. An in-depth understanding of such strategies is a requisite first step toward developing interventions that support caregiver-mediated medication management. We conducted semi-structured qualitative interviews with 20 family caregivers of CSHCN who were recruited as part of a community engaged research between PurdueUniversityCollegeofPharmacy and IndianaFamilytoFamily. Interviews were conducted through zoom and audio recorded. Each participant was provided with a $50 honorarium. Interviews were professionally transcribed and content analyzed to generate categories of medication management strategies. Five overarching categories of medication management strategies were identified. These included (1) medications, supplies and equipment inventory management; (2) organizing and tracking medications, supplies and equipment; (3) medication-related communication, coordination and engagement; (4) medication administration and (5) researching and learning about medications. Within each category, caregivers developed or adapted specific strategies to overcome barriers in diverse care contexts (e.g., when interacting with healthcare systems, school staff or other members of their household). These findings can inform current clinical practice through improved awareness of different strategies employed by caregivers and lay a foundation to develop interventions designed to support caregiver mediated medication management.

Resilience measurement scale in family caregivers of children with cancer: Multidimensional item response theory modeling.

Currently, information about the psychometric properties of the Resilience Measurement Scale (RESI-M) in family caregivers of children with cancer according to item response theory (IRT) is not available; this information could complement and confirm the findings available from classical test theory (CTT). The objective of this study was to test the five-factor structure of the RESI-M using a full information confirmatory multidimensional IRT graded response model and to estimate the multidimensional item-level parameters of discrimination (MDISC) and difficulty (MDIFF) from the RESI-M scale to investigate its construct validity and level of measurement error. An observational study was carried out, which included a sample of 633 primary caregivers of children with cancer, who were recruited through nonprobabilistic sampling. The caregivers responded to a battery of tests that included a sociodemographic variables questionnaire, the RESI-M, and measures of depression, quality of life, anxiety, and caregiver burden to explore convergent and divergent validity. The main findings confirmed a five-factor structure of the RESI-M scale, with RMSEA = 0.078 (95% CI: 0.075, 0.080), TLI = 0.90, and CFI = 0.91. The estimation of the MDISC and MDIFF parameters indicated different values for each item, showing that all the items contribute differentially to the measurement of the dimensions of resilience. That regardless of the measurement approach (IRT or CTT), the five-factor model of the RESI-M is valid at the theoretical, empirical, and methodological levels.