Purpose: To investigate the effect of caregiver burden, resilience, and quality of life of the parents of patients who are followed-up in a tertiary pediatric rehabilitation clinic.
Design And Methods: This is a correlational cross-sectional study. Parents of patients who attend to utilize pediatric rehabilitation outpatient clinics of a tertiary center on a regular basis were invited to participate. All participants filled in the Zarit Caregiver Burden (ZCB) scale, Family Resilience scale (FRS) and Nottingham Health Profile (NHP).
Results: A total of 107 patient and caregiver dyads were included. Fifty-five (51%) patients had cerebral palsy, 10 (9%) had spina bifida and 42 (39%) had other neurodevelopmental disorders. Eighty-one (75%) of the caregivers were mothers. There was a significant difference in the caregiver burden between ambulatory children (Mean ZCB score 30.11 ± 13.56) and non-ambulatory patients (Mean ZCB score 37.22 ± 13.91) (p = .01). There were moderate negative correlations between caregiver burden and FRS commitment to life and FRS self-sufficiency subscales. Caregiver burden significantly positively correlated with all NHP domains.
Conclusions: Caregiver burden is significantly higher in parents of non-ambulatory children when compared to ambulatory children in the pediatric rehabilitation setting. Caregiver burden and resilience correlated on moderate levels, but the factors influencing them are still unclear.
Practice Implications: Healthcare and social support should be given to all caregivers in pediatric rehabilitation setting, but more so to the caregivers of non-ambulatory patients.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1016/j.pedn.2019.10.014 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Family Connections: The Impact of an Education Program for Carers of Individuals With Borderline Personality Disorder in Italian Mental Health Services.
Fam Process
March 2025
Unit of Psychiatry, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy.
Borderline personality disorder (BPD) has a strong impact not only on patients' lives but also on their families. The presence of an invalidating environment is one of the key factors in the etiology of BPD. This study evaluated the impact of the Family connections (FC) program on burden, grief, and other clinical variables in 202 caregivers and identified the profiles of participants who improved/deteriorated their levels of burden and grief.
View Article and Find Full Text PDFIndividual and system-level determinants of caregivers' quality of life among inner-city preschool children with asthma.
J Asthma
January 2025
Division of Pulmonary and Critical Care Medicine, Department of Medicine, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
Caregivers of children with asthma can become overwhelmed by the burden of care provision. Guided by the socioecological framework, we examined individual and system-level factors associated with caregiver health-related quality of life (HRQoL) among preschool children (aged two to six years) enrolled in a multilevel home- and school-based asthma educational intervention in Baltimore, Maryland. Primary outcome was caregiver HRQoL measured at baseline and six months.
View Article and Find Full Text PDFModeling Pathways by which the Caregiver TLC Psychoeducational Program Impacts Psychological Health of Caregivers.
Gerontologist
January 2025
Photozig, Inc., Moffett Field, CA, USA.
Background And Objectives: The study seeks to elucidate the pathways by which the Caregiver TLC psycho-educational program impacts the psychological health of caregivers by examining the degree to which changes in self-efficacy, personal gains, and emotional support mediate the changes on perceived depression, anxiety and burden.
Research Design And Methods: Using pre-post data from the Caregiver TLC randomized controlled trial (n = 81) for each outcome and mediator pair, a series of multiple regression models were executed to test the degree to which the program's total effects on changes in depression, burden and anxiety from baseline to post-intervention are due to changes in each mediator variable from pre- and post-intervention assessments. Caregivers were primarily female (85%), White (62 %), Black (38%), with a median age of 62 and household income of $75,000+.
Exploring the perspectives of early-stage postoperative glioblastoma patients and their caregivers on end-of-life care planning: An exploratory qualitative interview study.
Appl Nurs Res
February 2025
Institute of Community Health Care, College of Nursing, National Yang Ming Chiao Tung University, Taipei, Taiwan; Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, UK. Electronic address:
Aim: Compare the convergent and divergent viewpoints of early-stage postoperative patients with glioblastoma and their caregivers on end-of-life care planning in Taiwan.
Background: Decision-making capacity in patients with glioblastoma may be compromised as disease progresses, making early future care planning essential to ensure that the provided care aligns with patients' goals. However, within many Asian cultures, the tendency to avoid discussions about death can lead patients to feel hesitant about addressing end-of-life care options.
A retrospective evaluation of patient characteristics and recommendations of a novel multidisciplinary clinic for persons with advanced disability from multiple sclerosis.
Mult Scler Relat Disord
January 2025
Department of Clinical Neurological Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.
Context: Persons with advanced multiple sclerosis (MS) require care beyond the disease modifying treatments offered in conventional MS clinics to address their complex physical and psychosocial needs. In the novel MS Comprehensive and Palliative Care (MSCPC) Program, an MS neurologist, palliative care specialist, and physiatrist collaborate to identify these needs and improve symptom control.
Objectives: To characterize the medical, physical, and psychosocial concerns of persons with advanced disability from MS and describe the recommended interventions of the MSCPC Program.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!