Family Caregivers Of Children Research Articles

Assessment of Health-Related Quality of Life and its Associated Factors in Family Caregivers of Children with Lymphoma at a National Hospital in Central Malawi

International Journal of Medicine and Public Health,2022,12,4,191-197.DOI:10.5530/ijmedph.2022.4.35Published:January 2023Type:Original ArticleAssessment of Health-Related Quality of Life and its Associated Factors in Family Caregivers of Children with Lymphoma at a National Hospital in Central MalawiPatrick GMC Phiri, Alfred Owino Odongo, and John G Kariuki Patrick GMC Phiri1,2,*, Alfred Owino Odongo1, John G Kariuki1 1School of Public Health, Mount Kenya University, Thika, KENYA. 2Institute of Applied Technology, Fatima College of Health Sciences, Al Maqam, Al Ain, Abu Dhabi, UAE. Abstract:Background: The health-related quality of life (HRQoL) HRQoL continues to be understudied among family caregivers with chronically ill children especially in developing countries like Malawi. Aim: This study aimed to assess health-related quality of life and determine the sociodemographic factors associated with the health-related quality of life of caregivers of children with lymphoma at a referral hospital in Malawi. Materials and Methods: A cross-sectional study was carried out at a referral hospital in Malawi, and 107 caregivers were recruited. The Medical Outcomes Study Questionnaire 36-Item Short Form was used to collect data which were analysed using SPSS Version 25. Results: All 107 targeted participants were assessed. Both the physical health component and the mental health component mean scores were low (M=50.63, SD=11.86 and M=45.51, SD=11.95, respectively). Time since diagnosis of the child’s cancer accounted for significant differences in both the physical and mental health components’ mean scores (F(2, 104)=5.030, p=0.002 and F(2, 104)=5.030, p=0.006, respectively). The caregivers >41years old, those who were married, those who were employed, and caregivers whose children were diagnosed >12 months were among those more likely to report a better physical health perception compared to those without these characteristics. Conclusion: The health-related quality of life of the caregivers at the referral hospital was severely impaired. The findings suggest that caregivers of children with lymphoma have the potential to develop more serious mental and physical health problems; hence, interventions to mitigate the burden of caring for children with lymphoma are needed. Keywords:Central hospital, Family caregivers, health-related quality of life, Lymphoma, Malawi, Medical outcomes questionnaire, Mental health, Physical healthView:PDF (223.6 KB)

The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey

BackgroundThe COVID-19 pandemic is affecting many areas of life and has posed additional strains on the highly vulnerable group of caregivers of children with rare diseases (RDs). The psychosocial situation of the family caregivers deserves more attention, both in research and practice. The current study explores the distress level of caregivers of children with RDs, their psychosocial information needs, and caregiver-reported health-related quality of life (HRQoL) of children with RDs in times of the COVID-19 pandemic.MethodsData from a cross-sectional online survey conducted within the German CARE-FAM-NET project (children affected by rare diseases and their families-network) between March and August 2020 were examined. The study sample included 149 family caregivers, mostly mothers (83.2%) of 167 children with RDs. The survey assessed demographic and disease-related characteristics, distress and everyday problems of caregivers (Distress Thermometer for Parents; scale 0–10), psychosocial information needs (self-developed items; scale 0–100), and caregiver-reported HRQoL of the children with RDs (DISABKIDS Chronic Generic Measure, short-form; scale 0–100). Using descriptive statistics, we analyzed the psychosocial situation of families during the COVID-19 pandemic. We further conducted correlation analysis to investigate interrelations.ResultsThe distress level among caregivers was high (M = 6.84, SD = 2.43); 89.6% reported clinical distress (≥ 4). Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) were frequent. Caregivers reported a wide range of psychosocial information needs. In about half of the children (49.5%), caregiver-reported HRQoL was low, while average HRQoL (M = 58.7, SD = 19.5) was comparable to parent-reported norm data of children with severe clinical conditions. Distress correlated positively with psychosocial information needs (r = 0.40), and negatively with the caregiver-reported HRQoL of the children (r = − 0.46).ConclusionsThis study indicates a high psychosocial burden on family caregivers of children with RDs during the early COVID-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocial information needs, and reduced caregiver-reported HRQoL in children with RDs. The findings highlight the ongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.

Evaluating the Benefits of a Family Support Program on the Health and Well-Being of Aging Family Caregivers of Adults with Intellectual and Developmental Disabilities

ABSTRACT Providing care to a family member with intellectual and developmental disabilities (I/DD) takes a toll on the health of the caregiver and the family, especially as they age. Research shows that peer mediated family support programs can improve caregiver health and well-being. To date, most family support programs have focused on family caregivers of children and youth with I/DD. The purpose of this study was to examine the benefits of participating in the Michigan Older Caregivers of Emerging Adults with Autism and Neurodevelopmental Disabilities (MI-OCEAN) family support program grounded in the Family Quality of Life (FQOL) framework. Specifically, we examined the effect of participation on health care utilization, caregiver well-being, and perceptions of global FQOL for older caregivers of adults with I/DD. Quantitative analysis of data gathered from 82 caregivers (age 50 and older) indicated that study participation was associated with increased use of Medicaid and improved caregiver well-being (reduced burden, stress, depression; increased health satisfaction and FQOL). Future research is needed to examine the long-term impact of the family support programs in improving the health and well-being of older caregivers of adults with I/DD.

The Health Economic Impact of Nephrotic Syndrome in the United States.

Nephrotic syndrome (NS) is a rare kidney syndrome with high morbidity. Although a common contributor to the burden of chronic kidney disease, the direct and indirect costs of NS to patients and family caregivers are unrecognized. The objective was to characterize the direct and indirect costs of NS to patients. Adults with NS and family caregivers of children with NS were eligible to participate if they had a diagnosis of primary NS, had disease for at least 1 year, and had no other severe health conditions. Data-collection surveys were generated with input from the Kidney Research Network Patient Advisory Board, and surveys were mailed to the eligible participants. Participants were provided $50 for the return of completed surveys. Costs were defined as either direct out-of-pocket costs or indirect costs (e.g., time). Descriptive statistics, including percentage and median (interquartile range [IQR]) are reported. Respondents included 28 adult patients and 17 caregivers of patients who were minors. Reported health insurance coverage included 35 (78%) with private insurance, 12 (27%) with public insurance, six (13%) with Children's Special Health Care Services, and one (2%) uninsured. Median annual direct costs were $3464 ($844-$5865) for adult patients and $1687 (IQR $1035-$4763) for caregivers. Of these costs, diet-associated costs contributed $1140 (IQR $600-$2400). The most substantial indirect cost was from the time spent planning/prepping meals (adults: 183 h/yr [IQR 114-331]; caregivers: 173 h/yr [IQR 84-205]). Adults and caregivers of children with NS face substantial disease-related direct and indirect costs beyond those covered by insurance. Following replication, the study will help health care providers, systems, and payers gain a better understanding of the financial and time burden incurred by those living with NS, consider barriers when treating patients, and develop supportive strategies.

Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study

BackgroundCaring for children living with life-threatening and life-limiting illnesses can be challenging. Parents’ roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights into the provision of home-based Pediatric Palliative Care (PPC) for seriously ill children. This study is aimed at exploring the experiences of family caregivers of children diagnosed with cancer while receiving home-based PPC.MethodsThis was a qualitative study. This study used semi-structured interviews which were audio-recorded with family caregivers of twelve children diagnosed with cancer who had received home-based PPC. The interviews were transcribed verbatim. The data were analyzed using qualitative content analysis. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.ResultsThree main themes emerged: (1) The implementation of home-based PPC; (2) The benefits of home-based PPC; and (3) The family caregivers’ hopes of the home-based PPC service and their impressions of home-based PPC. The implementation of home-based PPC described the experiences of family caregivers in receiving home-based PPC provided by nurses with particular attention to the bio-psychosocial-spiritual aspects. Family caregivers experienced several benefits from the home-based PCC service, where holistic care was provided for both the patient and the family. Family caregivers shared their hopes prior to receiving support from competent health care professionals to care for their sick child at home and improve the child's quality of life. They confirmed that these hopes were fulfilled through the home-based PPC service delivered by Rachel House.ConclusionsHome-based PPC provides several benefits with a positive impact for both the children diagnosed with cancer as well as their families. Nurses involved in the home-based PPC service provide holistic care with a family-centered approach. We believe that children with terminal illnesses and their families need and deserve home-based PPC during difficult times.

Family Caregivers of Children with Medical Complexity Report Diverse Sources of Emotional Support (GP706)

Family Caregivers of Children with Medical Complexity Report Diverse Sources of Emotional Support (GP706)

Family Caregivers of Children with Medical Complexity Report Elevated Levels of Emotional Distress (GP734)

Family Caregivers of Children with Medical Complexity Report Elevated Levels of Emotional Distress (GP734)

Case Study: Achieving "Hands-On" Practice for Remote Family Caregivers and Homecare Nurses of Children with Medical Complexity.

Pediatric nursing expertise in home care requires continuous development and maintenance of competencies. Through the pandemic, practice of essential "hands-on" skills was enabled by delivery of training mannequins from hospital to home care and a shift to virtual education. Learners (n = 57) included family caregivers of children with medical complexity and nurses new to home care. Evaluation informed iterative design of the service and signalled "Connected Care on the Go!" as desirable (100% highly satisfied), feasible (100% easily implemented) and viable. Now a sustainable service, this nurse-led innovation promotes partnership across leaders, sectors and geographies to address specialized training needs in pediatric home care.

Effectiveness of Supportive Psychoeducational Program on Burden and feeling of hopelessness among Family Caregivers of Children with Down Syndrome

Effectiveness of Supportive Psychoeducational Program on Burden and feeling of hopelessness among Family Caregivers of Children with Down Syndrome

RESILIÊNCIA DE CUIDADORES FAMILIARES DE CRIANÇAS E ADOLESCENTES COM CÂNCER E FATORES ASSOCIADOS: ESTUDO DE MÉTODOS MISTOS

ABSTRACT Objective to analyze the relationship between resilience and associated factors (stress, minor psychiatric disorders and quality of life) of family caregivers with children and adolescents undergoing cancer treatment. Method mixed methods research, with sequential explanatory strategy, carried out with family caregivers of children and adolescents undergoing cancer treatment in a public hospital in the Rio Grande do Sul State, Brazil. Data collection took place from February to September 2018. The quantitative study was cross-sectional in nature, and the qualitative research was descriptive-exploratory. Participants included 62 family caregivers in the quantitative stage and 16 responded to semi-structured interviews. An instrument containing sociodemographic, economic, labor, health and resilience scales (CD-RISC-10-Br), minor psychiatric disorders (MPDs) (SRQ-20), quality of life (QOL) (WHOQO-Bref) and stress and semi-structured interview were applied. Descriptive and inferential statistics were used for quantitative data and content analysis for qualitative data. Results family caregivers had a moderate level of resilience (48.4%); high level of perceived stress (41%); suspicion for MPDs (45%). They presented satisfaction in the physical Qol domains (67.7%); psychological (62.9%); personal relationships (61.3%), and dissatisfaction in the environment domain (75.8%). The interviews reported for health changes that could trigger MPD, stress and changes in quality of life. Conclusion high level of stress; suspicion for MPD and low QoL, with the environment, were evidenced as associated factors for a lower level of resilience of family caregivers. The need to develop actions that strengthen resilience was percieved, as caregivers were essential for the effectiveness of the care plan for children and adolescents undergoing cancer treatment.

Asthma academy: A student nurse-led telehealth education program for low-income family caregivers of children with asthma.

AimsThe aims of the Asthma Academy study were to (1) evaluate the telehealth performance of DNP students, (2) evaluate the perceived learning experience of DNP students and (3) investigate whether an association exists related to student performance and family caregiver outcomes.DesignA descriptive study was conducted with doctor of nursing practice students.MethodsStudents conducted telehealth visits to help family caregivers of children with asthma and were rated on their performance by two faculty members using a rubric. Student perception data were gathered via survey.ResultsOut of a total possible score of 15 points, the mean telehealth performance score of students was 13.38 points. Students indicated the telehealth experience was valuable and that they were satisfied with their learning. This model of leveraging telehealth to bridge nursing students to the community may be adapted to help family caregivers of children with various disease foci.

Quality of life of family caregivers of children with microcephaly

Assess the quality of life of family caregivers of children with microcephaly. This is an analytical cross-sectional study developed in Teresina-PI, carried out in a rehabilitation center. For data collection a form was used to investigate the sociodemographic profile and the Medical Outcomes Study 36 - Item Short-Form Health Survey instrument to assess quality of life. For data analysis, we used the statistical tests Student's t, ANOVA, U- Mann Whitney and Kruskal-Wallis. The descriptive analysis of the results showed that the functional capacity domain presented the most impairment by obtaining the highest score. The dimensions vitality and pain showed the lowest averages, representing the less affected domains. The associations between the sociodemographic characteristics and the domains of quality of life were significant between the variables marital status and pain, education and the domains vitality and emotional aspect, and between employment status and general health status. The quality of life of family caregivers presented losses related to the change of routine and the difficulties faced on a daily basis, highlighting the importance of covering the health of caregivers within the assistance offered to children with special needs, contributing to the well-being of those who care and consequently of those who are cared for.

Anxiety and Depression among Family Caregivers of Children with Epilepsy in Burkina Faso

AbstractBackground Epilepsy is a common and chronic neurological disorder influencing children's cognitive and behavioral performance. Primary caregivers of children with epilepsy (CWE) report high levels of depression and anxiety.Patients and Methods We performed a cross-sectional study on caregivers of CWE in the Neurology Department of Yalgado Ouédraogo University Teaching Hospital from May 7, 2020 to August 18, 2020. The State-Trait Anxiety Inventory scale and Beck Depression Inventory scale were assessed to screen anxiety and depression.Results One hundred caregivers with a mean age of 37.75 ± 10.69 years were included in the study. The majority of them were female gender (73%), aged <40 years (59%), and residing in rural areas (79%). Most of caregivers were female gender (73%) and the mothers of children (67%). The majority of CWE were boys (55%), having generalized epilepsy (55%) and epilepsy duration less than 6 years (74%). Anxiety was observed in 56%, depression in 27%, and both anxiety and depression in 23% of caregivers. The factors influencing anxiety among caregivers were female gender (p = 0.04), being patient's mothers (p = 0.04), and caring male patients (p = 0.04). The factors associated with caregiver's depression were being married (p = 0.03) and caring patients with five seizures per year (p = 0.04).Conclusion Our study revealed very high rates of anxiety and depressive disorder among caregivers of CWE in Burkina Faso.

Development of the Caregiving Burden Scale for Family Caregivers of Children with Cancer.

Due to the burden of caregiving, family caregivers of children with cancer suffer from physical and psychosocial health problems. The aim of this study was to develop a Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and to assess its psychometric properties. A methodological, descriptive study design was conducted. The study sample consisted of 217 family caregivers caring for children with cancer between the ages of 0 and 18 years. The item pool of the scale was created using the Delphi Technique. The Cronbach's alpha coefficient for the overall scale was 0.93. The item-total score correlations ranged from 0.424 to 0.645. The exploratory factor analysis showed that the scale explained 68.34% of the total variance. The confirmatory factor analysis also showed that the factor loadings of the scale ranged from 0.46 to 0.96. NNFI, CFI, and IFI were found to be > 0.90, and RMSEA was found to be < 0.09. The CBSFC-CC was found to be a good multidimensional instrument for evaluating the burden on family caregivers of pediatric cancer patients. It can be used in clinical practice and research. This tool can be considered to tailor interventions aimed at improving caregiver outcomes.

Modifiable personal and environmental factors associated with anxiety in family caregivers of children with disabilities: A comparison between parents and grandparents

BackgroundCaregivers of children with disabilities might face high risk of anxiety, but the specific influencing factors may be different between parents and grandparents. This study is to explore the influencing modifiable factors from personal and environmental dimensions, so as to provide practical reference for effectively preventing and alleviating anxiety of this population. MethodsA total of 504 primary caregivers were investigated in Shanghai, China, of which 496 parents and grandparents were included in the analysis. Risk of anxiety was measured by the Generalized Anxiety Disorder 7-item (GAD-7) Scale. Descriptive statistics, univariate analysis, and multivariable logistic regression were performed to describe the personal and environmental characteristics of parents and grandparents, risk of anxiety, and identify the significant factors. Results35.1% of the total caregivers had the risk of anxiety, parents (35.8%) were slightly more anxious than grandparents (33.1%). Among parents, children's stable emotion (AOR=0.263, 95% CI=0.113, 0.611), higher household income (AOR=0.664; 95% CI=0.519, 0.850), owning a house (AOR=0.326; 95% CI=0.174, 0.610), and better barrier-free construction (AOR=0.400; 95% CI=0.170, 0.941) were associated with lower odds of anxiety. As for grandparents, significant association was merely found in caregiving time (AOR=2.936; 95% CI=1.064, 8.107). LimitationsGiven the cross-sectional design, we would not infer causal relationships. ConclusionsAnxiety among family caregivers of children with disabilities was not encouraging and need to be urgently concerned. To reach optimal efficiency, intergenerational differences should be considered when health care providers and policy makers taking measures to facilitate the mental health of this population.

Anxiety, depression, and stress in caregivers of children and adolescents with mental disorders in Ghana and implications for medication adherence.

This study assessed levels of anxiety, depression, and stress among family caregivers of children and adolescents with mental disorders in Ghana and the implication on medication adherence. A cross-sectional study. The study was conducted at the outpatient departments of the three main public psychiatric hospitals in Ghana. Two hundred and ten non-paid family caregivers of children and adolescents with mental disorders were recruited for this study. The study assessed symptoms of anxiety, depression and stress among the caregivers and estimated caregiver-reported medication adherence. About 56.2%, 66.2% and 78% of the caregivers experienced severe anxiety, severe depression and moderate to severe stress symptoms respectively. From the multiple logistic regression model, while anxiety was significantly affected by religion and education, depression was influenced by sex, age, marital status, proximity to facility, and employment status. Female caregivers had about four times higher odds of being depressed compared to male caregivers (aOR: 3.81, 95% CI: 1.66 - 8.75). The caregiver-reported medication adherence was 11.9%. Anxiety was significantly predictive of medication adherence. Most family caregivers of children and adolescents with mental disorders experienced symptoms of anxiety, depression and stress with anxiety having implications for medication adherence. The study findings underscore the need to consider psychological characteristics of caregivers and the provision of mental health support for them, as part of the routine health care for children and adolescents with mental disorders. None indicated.

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

Background: Family caregivers of children with Down Syndrome are frequently unstable and forego their psychological well-being, suffer additional economic difficulties, ill health and cope ineffectively than families without disabilities. Aim: This study aimed to assess 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 Down Syndrome in the specialized clinics of the university pediatric hospital affiliated to Ain Shams University Hospitals. Subjects: A sample of 60 family caregivers of children with Down Syndrome. The study tools were: 1) Interviewing Questionnaire, 2) Brief-COPE inventory (Carver, 1997) and 3) Ryff’s Psychological well-being scale (1989). The results: The study showed that family caregivers of children with Down Syndrome depended mainly on emotion-focused coping strategies in managing burden of child caregiving and the most frequent used emotion focused coping strategies were religion, acceptance and venting while the most frequent used problem-focused coping strategy was use of instrumental support. Concerning to psychological well-being, more than half of family caregivers of children with Down Syndrome had psychological well-being less than usual. Conclusions: There was a negative statistically significant correlation between psychological well- being and all types of emotion-focused coping strategies except for humor, acceptance and religion. Meanwhile, there was a positive statistically significant correlation between level of psychological well-being and all subscales of problem-focused coping strategies. Recommendations: Future research to assess challenges encountered by siblings of Down Syndrome children and to apply supportive intervention that promotes positive relationships and attitudes as well as Establishment of counseling clinics for parents and siblings to improve their psychological well-being and coping strategies.

Caregiver Voices: Initial Impact of COVID-19 on Family Caregivers of Children with and Without Developmental Disabilities

Caregiver Voices: Initial Impact of COVID-19 on Family Caregivers of Children with and Without Developmental Disabilities

The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK

Caregivers of a child with a neurodevelopmental disability are more vulnerable to mental health difficulties. These difficulties are influenced by the child’s challenging behaviours, and the caregiver’s coping strategies; factors impacted by the COVID-19 pandemic. An online mixed methods survey was conducted on caregivers of children with neurodevelopmental disabilities (n = 43) and children who are typically developing (n = 67). The results showed that presence of challenging behaviours related to neurodevelopmental disability, and caregiver coping strategies predicted caregiver psychological distress during lockdown. Themes that emerged included ‘confusing messages and guidance’, ‘loss of freedom’ and ‘unsupported and forgotten’. The results demonstrate the pressing need for the implementation of appropriate support to protect the mental health of caregivers across the UK.

Psycho-educational Nursing Intervention for Improving Coping Strategies and Psychological Well-Being among Family Caregivers of Children with Down Syndrome

Background: Training family caregivers of children with Down Syndrome on how to promote their own psychological well-being and to cope effectively is essential as they are frequently unstable and forego their psychological well-being. Aim: This study aimed to assess the effect of psycho-educational nursing intervention on coping strategies and psychological well-being among family caregivers of children with Down Syndrome. Design: A quasi-experimental design was utilized in this study. Setting: This study was carried out in the Genes Clinics of Down Syndrome in the specialized clinics of the university pediatric hospital affiliated to Ain Shams University Hospitals. Subjects: A sample of 60 family caregivers of children with Down Syndrome. The study tools were: 1) Interviewing Questionnaire, 2) Brief-COPE inventory (Carver, 1997), 3) Ryff’s Psychological well-being scale (1989) and 4) Psycho-educational program. The results: There were highly statistically significant differences between pre &amp; post intervention regarding to emotion-focused coping strategies except for humor, acceptance, religion, venting and substance use and there were highly statistically significant differences between pre &amp; post intervention regarding to problem-focused coping strategies except for use of instrumental support. Conclusions: There were highly statistically significant differences between pre &amp; post intervention regarding the level of psychological well-being. There was a negative statistically significant correlation between psychological well-being pre &amp; post intervention and all types of emotion-focused coping strategies except for humor, acceptance and religion. Meanwhile, there was a highly positive statistically significant correlation between psychological well-being pre &amp; post intervention and problem-focused coping strategies regarding active coping and positive reframing and a positive statistically significant correlation regarding use of instrumental support and planning. Recommendations: Future research to assess challenges encountered by siblings of Down Syndrome children and to apply supportive intervention that promotes positive relationships and attitudes.