Background Caregivers of children with cerebral palsy suffer from a substantial psychosocial burden. However, there is a scarcity of documentation of the various sources of burden in low- and middle-income settings. Methods We conducted qualitative in-depth interviews among mothers of children with cerebral palsy attending a physiotherapy facility. We purposively sampled mothers from rural and peri-urban areas in Tamil Nadu, India, till the point of data saturation. We analysed the transcripts using the socio-ecological model to identify the major dimensions of psychosocial burden among these mothers. Results At the individual level the mothers perceived aches and pains due to the heavy physical activity of caregiving. They also suffered from a feeling of guilt about the child’s condition. Due to the difficulty in balancing family and work, they had significant financial burdens. They also perceived a lack of knowledge and awareness about possible options for the treatment of their child. At the interpersonal level, the mothers lacked support from their husband and family in the process of caregiving. They also had to suffer the ill effects of alcoholism and domestic violence from their husbands. They had to compromise on the care they provided to the other family members and their children without cerebral palsy. At the community level, the mothers had no support from the community members and felt isolated from others. The mothers also reported discrimination and lack of participation in social events. Environmental stressors like lack of inclusive public spaces, lack of options for public transport and unfriendly work timings and environment were major sources of burden. The mothers felt that the disability welfare support offered by the government was grossly insufficient and there was no platform for interactions with other peers and mothers suffering from a similar burden. Conclusion Caregivers of children with cerebral palsy have unique burdens in a typical low- and middle-income setting including an intersection of gender norms, poverty, stigmatization and non-inclusive public policy, which need to be addressed to improve the quality of life of caregivers.
Telemedicine allows face-to-face interaction between the medical specialist and the patient. We present our experience of 102 pediatric telecardiology consultations between a tertiary care cardiac center and a remote rural hospital located 120 miles away, between July 2000 and December 2003. The connection was through a Very Small Aperture Terminal satellite bandwidth provided by the Indian Space Research Organization. An S-video link between the echocardiographic and videoconferencing equipment at the remote center allowed the specialist to view images in real time. Pathology was ruled out in 50 (49%) children by tele-echocardiography. Cardiac problems were diagnosed in 52 children (51%), of whom 30 (29%) required surgery. Successful cardiac surgery following telediagnosis was carried out in 18 patients, 8 are awaiting elective operations, and 4 died before surgical correction. The Very Small Aperture Terminal enabled a higher bandwidth that allowed clear images with no significant diagnostic errors. This study demonstrates that pediatric telecardiology effectively delivers cardiac care in rural centers in developing countries with stretched medical resources, where the specialists are urban centered and the majority of patients are rural based.
Persistence of the fifth aortic arch (PFAA) is a rare condition that results in the presence of an abnormal vessel originating from the distal ascending aorta proximal to the innominate artery. The distal connection and underlying cardiac or great vessel anomaly define the varied clinical presentations of this condition. CLINICAL SUMMARYA 1-year-old girl presented with cyanosis. On echocardiographic evaluation, she was given a diagnosis of tetralogy of Fallot with pulmonary atresia, patent ductus arteriosus, and collateral-dependent pulmonary blood flow. Angiocardiographic analysis showed a large vessel arising from the distal ascending aorta close to the innominate artery and joining the pulmonary artery (PA) confluence (Figure 1). Intraoperatively, she was found to have an abnormal artery (PFAA) arising from the posterior aspect of the ascending aorta close to the innominate artery and joining the PA confluence (Figure 2). She underwent total correction with closure of the ventricular septal defect, detachment of the PFAA from the ascending aorta, and pericardial patch plasty of the PA confluence. Right ventricle-PA continuity was established by using a valved porcine PA conduit. Her postoperative course was uneventful.
We report a rare case of infective endocarditis caused by Corynebacterium diphtheriae in an 8-year-old boy, 2 years after a right ventricular outflow tract reconstruction with a bovine Contegra valved conduit. The patient recovered well after an RV-PA conduit enblock explantation and replacement with an aortic homograft with antibiotic treatment. All bacteriological cultures of excised tissue and blood were negative. The aetiological agent was identified as C. diphtheriae subsp. gravis by 16s rDNA sequencing.
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