“What Didn’t I Do for this Child?”: Parents’ Retrospective Construction of their Child’s CP Diagnostic Process

AbstractIncreased life expectancy exposes ageing parents to a lifetime of living with a child with Cerebral Palsy (CP). The current study aims to highlight the ways in which ageing parents retrospectively construct child ’s CP diagnostic process. A phenomenological–narrative perspective was performed, in-depth, semi-structured interviews with 15 ageing parents of children with CP, followed by a content analysis. Three major phases in coping with child’s CP emerged: (1) “What’s wrong with my child? Give me a name”: Searching for extrinsic recognition of the pathology, (2) “When you first hear the words you are “thrown” into a new world”: Perceiving the bad news as a turning point, and (3) “You won’t get any special treatment”: A lifetime of maneuvering between disability and able-bodie d society. Constructing positive narrative helps parents achieve a sense of closure at this stage of their lives and it can serve as a therapeutic toll.
Source: Journal of Developmental and Physical Disabilities - Category: Disability Source Type: research

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Conclusions: Adults with CP showed high and stable levels of accomplishment and satisfaction in daily activities and social participation more than 25 years after SDR. This is in contrast with the literature, where functional decline was shown for individuals with CP as they age. The relation with functional mobility highlights the importance to focus the rehabilitation on maintaining walking ability in order to enable high level of daily activities and social participation in adults with CP.Implications for rehabilitationSelective dorsal rhizotomy (SDR) is a valuable treatment option for a selective group of childr...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
Discussion: These results suggest that modified constraint-induced-movement-therapy with bimanual training is effective in Brachial Plexus Birth Injury. They indicate a comparable improved bimanual performance in children with Brachial Plexus Birth Injury than in unilateral Cerebral Palsy and suggests that both groups of children have affectively overcome their developmental disregard.IMPLICATIONS FOR REHABILITATIONChildren with Brachial Plexus Birth Injury frequently experience difficulties in activities of daily living.It has recently been suggested that children with Brachial Plexus Birth Injury may also show a non-use ...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
Authors: Khakwani A, Gannon D Abstract A 44-year-old female, with a background of cerebral palsy, epilepsy and learning disabilities, presented with multiple seizures and a persistently reduced consciousness level secondary to valproate-induced hyperammonaemic encephalopathy (plasma levels>50 µg/dl). Withdrawal of valproate and subsequent infusion of L-carnitine led to full recovery. Nonhepatic hyperammonaemia has been shown to be effectively treated by intravenous L-carnitine therapy by a series of case reports. To date, no randomised controlled trials have demonstrated this. Hyperammonaemic encephalopath...
Source: Journal of the Royal College of Physicians of Edinburgh - Category: General Medicine Tags: J R Coll Physicians Edinb Source Type: research
iu Hallez The use of data logging systems for capturing wheelchair and user behavior has increased rapidly over the past few years. Wheelchairs ensure more independent mobility and better quality of life for people with motor disabilities. Especially, for people with complex movement disorders, such as dyskinetic cerebral palsy (DCP) who lack the ability to walk or to handle objects, wheelchairs offer a means of integration into daily life. The mobility of DCP patients is based on a head-foot wheelchair steering system. In this work, a data logging system is proposed to capture data from human-wheelchair interaction...
Source: Sensors - Category: Biotechnology Authors: Tags: Article Source Type: research
Conclusions: Having a validated powered mobility simulator for children provides a viable option for an additional practice mode. The MiWe-C simulator is affordable and a user-friendly simulator that can be used anywhere including at home and in school. Children can be independent when practicing even if they are not yet proficient drivers since continual adult assistance is not needed.Implications for rehabilitationHaving a validated powered mobility simulator for children provides a viable option for an additional practice mode.The MiWe-C is now validated to be used with children 5-18 years with physical disabilities.The...
Source: Disability and Rehabilitation. Assistive Technology. - Category: Rehabilitation Authors: Tags: Disabil Rehabil Assist Technol Source Type: research
ConclusionAdults with spastic diplegic CP who received their first orthopaedic intervention more than 15  years ago (based on ISA) showed similar incidence of spinal deformities as reported in the younger CP population, suggesting stability of spinal curvature into adulthood.Graphic abstractThese slides can be retrieved under Electronic Supplementary Material.
Source: European Spine Journal - Category: Orthopaedics Source Type: research
Authors: Zhang Y, Gao C, Chen D, Wang C, Chen L, Zhang Y, Li B Abstract In addition to abnormalities of motor and posture, children with cerebral palsy (CP) often have intellectual disability. As a complementary and alternative traditional Chinese medicine (TCM) therapy, Chinese Tuina massage, also called Tuina in China, has been widely applied in clinical treatment for CP in China for a long time. However, the molecular basis for this still remains largely unknown. Recently, DNA hydroxymethylation has been shown to be sensitive to environment and plays critical roles in some neurological disorders, whereas the res...
Source: Evidence-based Complementary and Alternative Medicine - Category: Complementary Medicine Tags: Evid Based Complement Alternat Med Source Type: research
This article describes the current state of health care transition, focusing on some of the elements that contribute to the complexity of this challenging life period, including: changes to health care insurance, medicolegal considerations and options for supported decision making, discussions about vocations and related barriers and resources, and important psychosocial issues faced by many patients with cerebral palsy. Evidence-based processes and practices are described that can help facilitate health care transition planning and improve outcomes. PMID: 31760989 [PubMed - in process]
Source: Health Physics - Category: Physics Authors: Tags: Phys Med Rehabil Clin N Am Source Type: research
(I copiedthis over from my shares feed as it fits better here).My #1 is doing their special Olympics strength training atBuilt on Bravery, located at the Mendota Height MN Lions United Fitness Center (map):Lions United is a new kind of training center, designed specifically to prepare people with disabilities for exceptional performance in individual competitions, team sports and life, especially people with autism, down syndrome and cerebral palsy. We ’re dedicated to Special Olympics’ Project UNIFY and Unified Sports®, which means we bring people of all abilities together to strengthen individua...
Source: Be the Best You can Be - Category: Disability Tags: athletics cognitive impairment exercise Explosive Child health Twin Cities Source Type: blogs
Children with cerebral palsy (CP) will be cared for at some point by all pediatricians and many pediatric subspecialists due to this condition being the most common motor disability of childhood. Comprehensive care of the child with CP requires individuals with specialized training, and these children benefit from an interdisciplinary team approach to care. CP is heterogeneous due to varied causes, which necessitates individualized treatment plans. The CP specialist must be prepared to support the needs of the child with CP holistically and must dialogue regularly with members of the team and involve the family in decision-making.
Source: Physical Medicine and Rehabilitation Clinics of North America - Category: Rehabilitation Authors: Source Type: research
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