Parental Caregiver Burden Research Articles

¡Iniciando! la Adultez, a bilingual treatment program for Latino, autistic young adults and their Spanish-speaking parents: a pilot study

Objectives Latino young adults with autism spectrum disorder (ASD) face many challenges during the transition to adulthood, particularly regarding executive functioning (EF) and mental health symptom management. Latinos with ASD are particularly underserved, with existing supports often neglecting these critical areas. The study aims to evaluate a culturally and linguistically tailored intervention to better support Latino young adults by improving their adaptive functioning to enhance social outcomes and quality of life. Methods The culturally adapted and translated intervention, called ¡Iniciando! la Adultez, is a 12-week therapy program based on an evidence-based treatment (Launching! to Adulthood). The present study involved young adults with ASD (n = 26) and their Spanish-speaking parents (n = 38). Participants completed measures at baseline, mid-treatment, and post-treatment. Results The ¡Iniciando! la Adultez program led to significant improvements in social domains (e.g. cognition, motivation), and improvements in adaptive functioning, EF, quality of life, self-efficacy, and emotion regulation. Parental stress and caregiver burden, however, did not show significant changes. Conclusions Tailored, holistic interventions like ¡Iniciando! la Adultez are useful for supporting autistic young adults. These programs effectively address critical gaps in EF and mental health management, especially for Latino individuals, promoting better outcomes during the transition to adulthood.

Caregiver burden among parents of school-age children with asthma: a cross-sectional study.

To investigate the caregiver burden of parents of school-age children with asthma and analyze the factors influencing their caregiver burden. A convenience sampling method was used to select 366 parents of school-age children with asthma who visited the outpatient departments of three tertiary hospitals in Sichuan Province, China, from January 2021 to July 2021. A general information questionnaire and the Caregiver Burden Inventory (CBI) were used to assess the current caregiver burden and analyze the influencing factors. The caregiver burden score of parents of school-age children with asthma was 27 (17, 39), with 40.43% of parents experiencing moderate to high levels of burden. Detailed results of univariate analysis showed that there were significant differences in caregiver burden scores based on parents' gender, highest education level, number of children, occupation, family history of asthma, monthly family income, annual medical expenses for the child, child's gender, whether the child had undergone lung function tests, number of emergency visits due to asthma exacerbation in the past 3 months, and whether the child had missed school due to asthma exacerbation in the past 3 months (p < 0.1). Detailed results of multivariate analysis showed that parents' gender, occupation, family history of asthma, monthly family income, annual medical expenses for the child, number of emergency visits due to asthma exacerbation in the past 3 months, and whether the child had missed school due to asthma exacerbation in the past 3 months were independent risk factors for caregiver burden in parents of school-age children with asthma (p < 0.05). Parents of school-age children with asthma experience a certain level of caregiver burden, with over one-third of parents experiencing moderate to high levels of burden. Being a mother, being a worker, having no family history of asthma, having low monthly family income, having high annual medical expenses for the child, having frequent emergency visits due to asthma exacerbation in the past 3 months, and having missed school due to asthma exacerbation in the past 3 months are independent risk factors for caregiver burden in parents of school-age children with asthma, healthcare providers should develop feasible coping strategies, such as paying attention to caregivers' psychological condition to reduce the burden of caring for parents of school-age children with asthma. The entire society should also make efforts in improving social support and strengthening healthcare coverage in order to achieve the aforementioned goals.

The relationship between the caregiver burden and quality of life in parents of Turkish children with anorectal malformation or Hirschsprung's disease

BackgroundAnorectal malformation (ARM) or Hirschsprung's disease (HD) in children impact on parents' burden of care and quality of life (QoL). The aim of this study was to investigate the relationship between caregiver burden and QoL in parents of children with ARM or HD. Design and methodsThis cross-sectional study was conducted with 51 parents who completed the Zarit Burden Inventory (ZBI) and World Health Organization Quality of Life Scale-Short Form Turkish Version (WHOQOL-BREF-TR). ResultsThe mean (±SD) ZBI score was 33.6 (±12.7), and 47.1% of parents (n = 24) perceived their caregiver burden as mild, 31.4% (n = 16) as moderate, and 3.9% (n = 2) as severe. According to the multivariate linear regression, associated anomalies (β1 = 5.912), family income (β1 = −6.007), stoma care (β1 = 8.287), and diagnosis were identified to be significant determinants of caregiver burden. A negative, moderate, and significant relationship was identified between the ZBI scores and the physical domain (r = −0.417, p < .01), psychological domain (r = −0.421, p < .01), social relations domain (r = −0.398, p < .01), and environmental domain (r = −0.495, p < .01) scores of the WHOQOL-BREF-TR. ConclusionsThe mothers perceived their caregiver burden as mild. However, a significant number of parents suffer from moderate to heavy caregiver burden. An increase in the caregiver burden of parents reduces their quality of life. Practice implicationsHeightened awareness of the potential for caregiver burden and its association with quality of life among parents of children with ARM and HD may contribute to improved.

Parents’ Evaluation of Changes in Parents’ and Children’ Physical and Psychological Health Status in COVID-19 Pandemic

Introduction: People’s social activities were restricted by COVID-19 pandemic measures such as blocking access to cities, suspending schools. For normal psychological development and well-being of children, social interaction is an essential component. COVID-19 crisis has affected the psychological well-being of both parents and children through parental job loss, income loss, caregiving burden and terror of infection. &#x0D; Materials &amp; Methods: This research was done in the 2020-2021 academic year. Snowball sampling method is used, and 100 participants were reached during a 4-week time interval after ethical approval. Survey was created as an online form and its link was distributed via social media platforms. Survey composed of demographic questions and topic related questions about COVID-19 to both parents and children. Questionnaire was designed for parents to fill out. For data analysis, Chi-Square test was used.&#x0D; Results: The mean age of participants was 40.36 ± 6.463 and mean age of participants’ children was 11.69 ± 3.390. 93% of participants indicated that internet usage of their child increased during the pandemic. 91.9% of the parents stated that they have fears/concerns about the coronavirus becoming pandemic in the world. 52% of the parents stated that their child gained weight during the pandemic process. Significant association was found between the child's weight gain and the increase in the child's fears/worries (p= .006). A significant relationship was found between the presence of COVID-19 cases in or around the family and the increase in the fears/worries of the children (p= .024). &#x0D; Conclusion: According to parents’ perspective, 93% of participants’ child internet usage increased during pandemic. 73% of the parents reported that there has been an increase in the fears/ worries of children. On the other hand, 96% of the participants have stated that they have concerns of being negatively affected economically due to coronavirus pandemic. Significant relationship between fears/worries of parents’ and children was not found. In our study, there has been a significant relationship between fears/worries of children and their weight status. Parents of children who stated an increase in the worries of their child also stated that their children gained weight. Also, significant relationship was found between the presence of COVID-19 cases in or around the family and the increase in the fears/worries of the children.

Spousal support, parent-nurse partnership and caregiver burden among parents of children with chronic diseases: A cross-sectional study.

To examine the effects of spousal support and parent-nurse partnership on caregiver burden of parents of children with chronic disease. With the trend of increasing the global number of children with chronic diseases, the parental caregiver burden has become increasingly prevalent. Cross-sectional study. The study participants included 115 parents of children diagnosed with chronic disease at a general hospital in South Korea. The study duration was 4 June 2021-30 April 2022. Self-reported measures included the parent-nurse partnership scale, the Korean version of the Parenting Alliance Inventory and the family caregiver burden scale. T-tests, ANOVA, Pearson's correlation coefficients and hierarchical linear multiple regression were conducted using IBM SPSS version 26.0. This study followed STROBE guideline. Parental caregiver burden was significantly negatively associated with spousal support and parent-nurse partnership. Factors significantly influencing caregiver burden were parental alcohol consumption; child's inherited metabolic disease, cardiovascular disease, disease relating to haematological tumours or kidney disease diagnosis; child's health perceived as poor by parents; child's dependency perceived as high by parents; hospitalization recency; and low spousal support. These factors accounted for 65% of caregiver burden. Parental caregiver burden was related to spousal support and parent-nurse partnership, but the primary factor affecting caregiver burden was spousal support. The results highlighted the role of healthcare professionals in educating parents of children with chronic diseases to facilitate spousal support and have implications for nursing and community-based interventions to reduce parental caregiver burden. Furthermore, they underlined that policymakers and other stakeholders should pay attention to the parental caregiver burden through government-based, family-centered strategies. Parents of children with chronic disease were recruited to perform the self-administered survey in the phase of data collection.

INVESTIGATION OF CAREGIVER BURDEN AND OCCUPATIONAL THERAPY INTERVENTION IN DISABLED INDIVIDUALS IN COVID 19 TERM

Objective It was conducted to determine the factors affecting the occupational therapy training and the care burden of parents in individuals who were to learn in the Covid 19. Methods: The study sample consisted of individuals whose average age was 23.27 ±311.77 years in a private education institution in Ankara. Caregiver burden of parents was evaluated with Zarit Caregiver Scale (ZCS). Activity performance and satisfaction levels of the individuals were evaluated with the Canadian Activity Performance Measurement (COPM). The intervention was applied for 12 weeks. Results It was determined that 44.4 % of the caregivers had a moderate care burden. A statistically significant difference was obtained when comparing the ZCB before and after COVID-19 (p=0.006). A statistically significant decrease was found in the number of activities during the COVID 19 period (p=0.000, t=4.89). Conclusions: Occupational therapy intervention resulted in improvement in the activity performance of individuals. It is necessary to plan more studies that include evaluation and intervention approaches in the fields of activity performance and satisfaction in the field of occupational therapy.

Hemophilia Caregiver Burden in a Low Socioeconomic Region of Turkey.

This study aims to evaluate the caregiver burden of parents of hemophilia patients and related factors in the southeast region of Turkey, where access to a regular healthcare facility is more complicated than in other areas. Twenty-six caregivers of patients with hemophilia were consecutively enrolled in this non-interventional study. Caregiver burden is measured using the "HemophiliaAssociated Caregiver Burden Scale" (HEMOCAB). Hemophilia affects 65.4% of caregivers emotionally, and 92.3% feel the burden caused by financial problems related to hemophilia. The perception of the patients by caregivers was negative in the groups of low educational degree and unstable employment status (P = .037 and P = .017, respectively). The employment status and job changes influence the caregiver burden because of hemophilia (P = .034 and P = .001, respectively). The groups of those who spent greater than 5 hours for transportation to the hemophilia treatment center (HTC) had a higher burden (P = .001). Multiple linear regression analysis analyzed variables affecting HEMOCAB, frequency, and burden total scores. The model created with the burden total score was statistically significant (P = .047). The main factors affecting caregiver burden were educational status, working conditions, and economic difficulties, as well as the length of infusion times and transfer to HTCs. There is a need to develop socioeconomic policies related to these problems.

Caregiver burden and inflammation in parents of children with special healthcare needs

Children with special healthcare needs (CSHCN) are a vulnerable population that require specialized services and are often cared for by parents. These parents experience psychological, physiological, and potential inflammatory dysfunction related to amplified caregiving burden which may increase with the complexity of the child’s condition. Due to the potential for inflammatory dysregulation, we aimed to compare caregiver burden and inflammation of parents with CSHCN based on the severity of the child’s condition to parents of typically developing children. A cross-sectional design that included parents of typically developing children (n = 60), non-complex chronic disease (n = 28; one chronic condition that does not progress), and complex chronic disease (n = 32) was used. Parents completed the Caregiver Burden Inventory and blood serum was collected to measure inflammation. Multivariate analyses of variance with post-hoc testing was used to determine between group differences. Parents of children with complex disease experienced greater caregiver burden than parents of typically developing children (p < 0.001) and non-complex chronic disease (p = 0.044). Parents of children with non-complex chronic disease reported greater caregiver burden than parents of typically developing children (p = 0.02). Parents of children with complex chronic disease had lower pro- (p = 0.042) and anti-inflammatory (p = 0.002) composite scores, than parents of typically developing children. Parents of children with greater medical complexity experienced more caregiver burden and potential inflammatory dysregulation. Future research should explore inflammatory processes in this specific population and self-care measures to improve psychological and physical well-being.

Psychological Well-Being and Care Giver Burden of Parents Having Child with Leukemia

Leukemia is one of most prevalent type of cancer among the children with age less than 15 years. Worldwide, Leukemia represents 32.5% of all types of cancer among the children. In Pakistan, 46.5% child with cancer diagnosed with leukemia. Both the mother and father are involved in the direct and indirect care of their child with leukemia Direct care is the tasks with the care of the child with leukemia and indirect care is the financial support and the facilities provided to the patients. Objective: To determine the psychological wellbeing and Care burden among parents having Children with Leukemia. Methods: A cross-sectional study designed was used. A sample of n=81 participants was recruited from Sadiq Abbasi Hospital Bahawalpur, through convenient sampling. The psychological wellbeing and care burden questionnaires were used to measure care burden and psychological wellbeing among parents having children with leukemia. Filled questionnaires were entered and analyzed through SPSS version-21. Results: Findings revealed that 71.60% participants had poor psychological wellbeing, 18.51% had fair and only 38.27% had good wellbeing during their children leukemia care. Similarly, 12.34% had low care burden, 38.27% had moderate and majority 49.38% were having high care burden. Conclusions: Majority of the parents of children with leukemia in this study were having high care burden and poor psychological wellbeing while taking care of their children

Examining the caregiver burden of parents whose children have type 1 diabetes

Examining the caregiver burden of parents whose children have type 1 diabetes

The effect of physical and psychosocial symptoms on caregiver burden of parents of children with cancer.

The aim of this study was to investigate the effects of parent's characteristics, physical and psychosocial symptoms, and child-related factors on caregiver burden of parents of children with cancer. This is a descriptive and cross-sectional study that included 172 parents of children with cancer. This study was performed between February and July 2019 in three major paediatric haematology and oncology units located in the centre of Turkey. Data were collected by using the descriptive information form, Pittsburgh Sleep Quality Index, Piper Fatigue Scale, Beck Depression Inventory, Trait Scale of the State-Trait Anxiety Inventory, Multidimensional Scale of Perceived Social Support and Zarit Caregiver Burden Scale. For data analysis, average and percentage calculations and multiple linear regression analyses were used. It was found that most of parents had poor sleep quality, moderate depression, fatigue, anxiety, high social support and moderate to severe caregiver burden. It was found that low education level, poor sleep quality, depression, trait anxiety, social support among the factors related to the parents, and the type of treatment and duration of the treatment from the factors related to the child had an effect on the caregiver burden. It was determined that the effective predictive factors explained 73.5% of the parents' caregiver burden. Caregiver burden is influenced by the parent- and child-related factors. Paediatric oncology nurses should plan interventions that support parents to cope with the caregiver burden during their children's cancer experience.

Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden.

Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.

Parental Caregiving Burden, Depression, Social Support, and Life Satisfaction: A Multigroup Analysis of Social Support for Parents of Young Children with Brain Lesions

The term social support refers to people’s interpersonal relationships and is a potentially powerful mediator for caregivers’ life satisfaction. This study examined the relationships between parental caregiver burden, depression, social support, and life satisfaction. It compared these relation variables between parents of preschool- and school-age children, as mediator effects of social support may differ across age ranges. Data were used from the Ministry of Health and Welfare of Korea’s research on support services and policies for people with brain lesions. Parental caregivers of preschool- ( n = 93) and school-age ( n = 91) children participated in this study. A multigroup analysis indicated a significant negative relationship between caregiving burden and depression with social support and parental life satisfaction and a significant positive relation for social support with life satisfaction for the overall group, preschool- and school age. Social support was a mediator for each group; however, the regression weight differed between preschool- and school-age children’s parents. The study confirms the importance of caregivers’ social support and suggests a need for family support strategies that account for children’s ages.

Experiences and Needs of Parents Caring for Children with Cerebral Palsy: A Systematic Review.

Caregiver burden of parents of children with disabilities is negatively associated with parental quality of life and psychosocial well-being and has been identified as a public health concern. Reviews have consolidated the experiences of these parents, but little is understood about the unique challenges faced by parents of children with cerebral palsy (CP). We aim to conduct an in-depth synthesis of the experiences and needs of parents of children with CP to better support them. Six electronic databases were searched systematically for qualitative research, and a thematic synthesis was performed. Seventeen studies from 1988 to 2019 encapsulating the experiences of 226 parents were included in this review. Four themes and 11 subthemes were identified: (1) self: the caregiver-parent trajectory (coming to terms with the fact, physical and emotional demands, and a nice outlet), (2) family: maintaining the family unit (juggling multiple children and parenting as a co-occupation), (3) society: social repercussions (facing public discrimination, rejection by extended family, and loss of freedom), and (4) parents' wish list (open communication and caring attitudes, funding and health care accessibility, social integration, and inclusivity). Apart from emotional adaptation and physical childcare difficulty, parents indicated a need for more information on health care services, funding, better attitudes and empathy from health care providers, properly trained educators, disability-friendly fixtures, and more public awareness. The findings in this review provide insight into the true experiences and needs of parents caring for children with CP and will aid clinicians in the development of family-centered care pathways for these patients.

Evaluation of Caregiver Burden, Needs, and Expectations of Spinal Muscular Atrophy Parents

Evaluation of Caregiver Burden, Needs, and Expectations of Spinal Muscular Atrophy Parents

Parental caregiver burden and recovery of adolescent anorexia nervosa after multi-family therapy

ABSTRACT This study investigated whether parental caregiving burden changed during adjunct multi-family therapy of adolescent anorexia nervosa and eating disorders not otherwise specified (EDNOS) and whether caregiver burden at baseline and changes in caregiver burden during treatment were associated with treatment outcome. Twenty-four females, 13 to 16 years old, and their parents, participated in the study. Caregiver burden was measured with the Eating Disorders Symptom Impact Scale, by mothers (n = 23) and fathers (n = 22). Treatment outcome was measured by adolescent body mass index, level of global functioning and self-rated eating disorder symptoms by the Eating Disorders Examination Questionnaire 4.0. All patient outcomes improved and overall caregiver burden decreased significantly during treatment. When broken down in aspects of caregiver burden the decrease in parental perceived isolation, was found to be associated with improvement of BMI and Children’s Global Assessment Scale. When analyzing fathers and mothers separately, we found that maternal feelings of guilt and paternal perceived burden of dysregulated behaviors at base-line were correlated to treatment outcome. Future studies are needed to clarify the role of caregiver burden as a potential mediator of treatment results.

Linking Maternal Caregiving Burden to Maternal and Child Adjustment: Testing Maternal Coping Strategies as Mediators and Moderators

This study examined the links between maternal caregiving burden and maternal and child adjustment, and whether these links were mediated and moderated by maternal coping strategies. Cross-sectional data were collected from 173 Chinese families with kindergarten aged children with special needs in Hong Kong, China (mean age = 61.53 months; 72% of them were boys). Using questionnaires, mothers rated their caregiving burden, use of different coping strategies, and the adjustment of themselves and their children with special needs. Results demonstrated that maternal caregiving burden was negatively associated with maternal and child adjustment. Moreover, the associations of maternal caregiving burden with maternal life satisfaction and depression were partially mediated by maternal planful problem solving, positive reappraisal, and seeking emotional support, whereas the association between maternal caregiving burden and child prosocial behaviors was partially mediated by maternal positive reappraisal. There was little evidence, however, for the moderating effects of maternal coping strategies. Theoretically, our findings highlighted the role of parental coping in understanding the mechanism through which parental caregiving burden may affect the adjustment of both parents and their children. Practically, our findings pointed to the utility of supporting parents of children with special needs by reducing their caregiving burden and increasing their use of specific coping strategies.

Care Burden in Parents of Children with Leukemia: A Cross-Sectional Study in the West of Iran

Background Parental caregiver burden is an important priority in children's oncology researches. The present study aimed to determine care burden among parents of children with leukemia. Materials and Methods This cross-sectional study was conducted among a total of 209 parents of children with leukemia who referred to Dr. Mohammad Kermanshahi Hospital, Kermanshah city, in the West of Iran, in 2018. Parents were surveyed with the caregiver burden scale and baseline characteristics items based on interview. Pearson correlation, t-test, and ANOVA analysis at 95% significant level were used in data analysis with SPSS software version16.0. Results The mean of care burden score was 56.43+9.32 and ranged from 0 to 88. 10.7%, 79.7%, and 9.6% of parents had low, moderate and high care burden, respectively.The higher care burden score was associated with the lower age of parents (r= -0.255, P < 0.001), higher educational level (P=0.028), and better economic status (P=0.001). Conclusion Our findings indicated that most of the parents of children with leukemia had moderate-to-high levels of care burden. Thus, health care providers are expected to be more available to respond to their requests and pay more attention to planning educational programs.

Examination of Care Burden and Stress Coping Styles of Parents of Children with Autism Spectrum Disorder

ObjectiveThe study was conducted to examine the caregiver burden and stress coping styles of parents of children with Autism Spectrum Disorder (ASD). Design and methodsThis descriptive cross-sectional study was conducted with parents of 131 children with ASD who were enrolled in a private education practice center in Istanbul between August 2015 and August 2016. The data were collected using a questionnaire prepared by the researchers, and the “Caregiver Strain Index” and “Ways of Coping Questionnaire.” ResultsThe mean age of the children in the sample group was 4.83 ± 0.99 years; 63.4% were boys. Nearly 40% (38.2%) were diagnosed as having ASD at the age of 2 years. It was determined that the parents of children with ASD had a higher burden of care (CSI mean score: 7.68 ± 4.30). The caregiver burden was significantly higher (p < 0.05) for parents of one child as compared to parents with more children, and parents with daughters compared to parents with sons. In addition, the mothers were found to have higher scores of ‘submissive approach’ and ‘seeking social support’ than fathers. ConclusionParents of children with ASD had a higher caregiver burden. Scores of approach types of self-confident, helpless, optimistic, and seeking social support were significant predictors of caregiver burden. Practice implicationsNurses are encouraged to take a more active role to improve the health of children with autism and families should contribute to mitigating the burden care of parents by informing families about social support systems.

Vicarious Futurity: Parents' Perspectives on Locating Strengths in Adolescents with Autism.

INTRODUCTION: Parents’ perspectives of strengths in adolescents with autism is the focus of this research. Children with Autism Spectrum Disorder (ASD) have some of the best outcomes for cognition, communication and social development when they begin intensive treatment during early childhood. Most research in ASD has focussed on this part of the lifespan. This has tended to ignore the need for research that covers the whole lifespan including adolescence and adulthood, where extremely poor outcomes often emerge. Furthermore, from a reductionist bio-medical view of ASD, research into adolescence and adulthood has highlighted the maladaptive and pathological behaviour of people with ASD. METHODS: This qualitative study provides a space for parents to identify the strengths of adolescents, aged from 13–19 years, with ASD. Parents with the experience of raising an adolescent with ASD were asked to take or gather five photographs that displayed the strengths of the adolescent. Data were generated through the discussion of the photographs between the parent(s) or primary caregivers of the adolescent and the researcher. Eight families, with nine adolescents were recruited for the research and 10 parents were interviewed. FINDINGS: The results of the research suggest that parents could identify strengths in adolescents with ASD and that these strengths were evaluated relative to diagnostic features of ASD or as supportive of daily family functioning. Furthermore, identifying adolescent strengths supported the parents’ hopes for the future, described as “vicarious futurity.”CONCLUSION: This perspective poses a challenge to the common assumptions that ASD is associated with dysfunctional family life dominated by poor parental mental health, caregiver burden and research that objectifies those with ASD as being challenging. Identifying strengths points to more opportunities for success for an adolescent with ASD.