Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study.

PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.

Surgical treatment of major intracardiac lesions associated with discordant atrioventricular connexion.

Thirteen patients with a discordant atrioventricular connexion underwent repair of major associated intracardiac defects. Of the patients, 10 had a discordant ventriculoarterial connexion while 3 had double outlet from the morphologically right ventricle. A ventricular septal defect was the most frequently encountered lesion, present alone or in combination with other lesions in all patients. The other major lesions were pulmonary stenosis in 8, Ebstein's malformation of the left atrioventricular valve in 2, and calcific aortic valve disease in one. The operations performed were closure of the ventricular septal defect in 4 patients, closure of the ventricular septal defect with pulmonary valvotomy in 3 patients (one of whom subsequently underwent replacement of the left atrioventricular valve). Modified Fontan's procedure was performed in 6 patients, one of whom also had replacement of the aortic valve. There was no operative death, although there was one early death on the 40th postoperative day due to septicemia. There has been no late death after an average follow-up of 1.2 years. There was one case of surgically induced complete heart block. All other patients are in normal sinus rhythm in New York Heart Association functional class I or II. Elective repair of major intracardiac anomalies in association with a discordant atrioventricular connexion can now be accomplished safely. The modified Fontan's procedure is a viable alternative in certain cases to the placement of an external valved conduit for relief of pulmonary outflow tract obstruction.

Chest injuries: a clinical and autopsy profile.

The clinical profiles and management of 236 consecutive chest injury patients treated and followed up at All India Institute of Medical Sciences between January 1983 and July 1985 were analyzed prospectively. There were 149 blunt and 87 penetrating injuries; 21 patients (9%) required thoracotomy. Single- or multiple-tube thoracostomy was performed in 141 patients (60%). The remaining 74 patients (31%) required only observation for a period of 24-48 hours. Fifteen patients (6.3%) died, the mortality being related to head injury in four, irreversible hypovolemic shock in four, pulmonary embolism in three, septicemia in two, and respiratory failure in two. Nonfatal complications included residual hemothorax in 18 cases, persistent air leak in 13, pulmonary infection in eight, pulmonary embolism in one, and empyema in one. The average hospital stay was 6.9 days. Evidence of chest injury of various magnitudes was found in 756 of 2,286 autopsies conducted for trauma-deaths during the same study period analyzed retrospectively; however, it was the major cause of death in only 147 (19%). Cardiac injuries accounted for 41% of the deaths resulting primarily from chest trauma. Only 10% of the patients who sustained cardiac injury reached hospital alive.

Fate of thrombectomized Björk-Shiley valves. A long-term cinefluoroscopic, echocardiographic, and hemodynamic evaluation.

Fourteen patients underwent thrombectomy for thrombosis of implanted Björk-Shiley valves (13 in the mitral and one in the aortic position) between January, 1975, and July, 1984. There was no operative mortality or perioperative embolism. Over a follow-up period of 1 to 96 months (average 23.5 months), there was no late mortality. Serial evaluation of valve function by cinefluoroscopy and echocardiography has shown no evidence of rethrombosis or valve dysfunction in any of the patients. Cardiac catheterization and angiocardiography done in 10 patients at various intervals (1 month to 6 years) postoperatively have shown normal valve function in all and normalization of elevated preoperative intracardiac pressures in the majority. Our experience suggests that thrombectomy of thrombosed Björk-Shiley valves provides excellent early and long-term results in terms of patient survival and valve function.

Thrombotic obstruction of Bjork-Shiley valves--diagnostic and surgical considerations.

We have evaluated 12 patients with thrombotic obstruction of the Bjork-Shiley valve since 1975, 11 in the mitral and 1 in the aortic position. During this period 442 patients with 303 mitral (181 plano-convex and 122 convexo-concave) and 205 aortic (112 plano-convex and 93 convexo-concave) Bjork-Shiley valves were available for follow-up. The incidence of thrombosis for the plano-convex model was 1.06% per patient year for the mitral position and 0.19% per patient year for the aortic position. The new convexo-concave model has brought down the incidence to 0.78% per patient year for the mitral (P less than 0.01) and 0% per patient year for the aortic valve. The onset of symptoms was acute (less than 15 days) in 41.7% and subacute (greater than 15 days) in 58.3% patients. All patients presented with pulmonary edema. Evidence of inadequate anticoagulation was present in only 3 (25%) patients. Reduction of prosthetic sounds and appearance of a new murmur was highly suggestive of valve thrombosis. Echocardiography and cinefluoroscopy was very useful for the instant recognition of this condition and had obviated the need for cardiac catheterisation in the last 6 patients. Emergency surgery was obligatory in all. Thrombectomy alone was successful in 9 patients. Three patients required replacement of the prosthesis. There was one operative death (mortality 8.3%). The long-term follow-up of these patients (3-82 months, mean 34 months) is excellent. We conclude that thrombotic obstruction of the Bjork-Shiley valve is often not related to inadequate anticoagulation, and more than half of the patients do not present with abrupt onset of symptoms. The convexo-concave model has significantly reduced this problem. Emergency surgery with thrombectomy is the procedure of choice for clotted prostheses.