Adult bifida chat group room spina

Moreover, adults with spina bifida are frequently hospitalized (Dicianno & Wilson, 2010) due to preventable conditions such as urinary tract infections and pressure ulcers (Kinsman & Doehring, 1996).In response to these poor distal outcomes, there has been increased emphasis on the acquisition of self-management competencies during adolescence to help reduce the occurrence of preventable health-related conditions and the need for restrictive care during adulthood (e.g., Buran, Brei, Sawin, Stevens, & Neufeld, 2006; Mukherjee, 2007).

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The scale demonstrates excellent internal consistency (Cronbach's alpha = .891).

Exploratory factor analysis yielded four factors, explaining 65.1% of the total variance.

Individuals who receive scholarships are eligible to apply again after two years. Applicants from the state of Kentucky are encouraged to also apply to the Kentucky Council on Developmental Disabilities Leadership Development Fund. Scholarships are available for adults or children born with Spina Bifida and parents of children under eighteen born with Spina Bifida who reside in Kentucky or Southern Indiana.

Applications can be obtained from call Carol Wray at (877) 367-5332. Consideration will be given to scholarships for siblings depending on funds available.

Developmental research suggests that skills central to self-management and autonomy in spina bifida (e.g., independent toileting/catheterization) appear to develop in a delayed manner (Davis, Shurtleff, Walker, Seidel, & Duguay, 2006; Schoenmakers, Gulmans, Gooskens, & Helders, 2004), with adolescents and young adults with spina bifida often maintaining a pattern of dependence upon their caregivers with respect to specialized self-management tasks (Blum, Resnick, Nelson, & St. The underpinnings of the delay and ongoing dependence in self-management skills are likely multi-factorial, including contributions from physical characteristics, level of knowledge/skill, intelligence, and available family support.

There is also growing evidence that deficits in executive functioning (e.g., planning, initiating, problem-solving) mediate the impact of neurological severity upon functional independence (Heffelfinger et al., 2008).

We are involved in pediatric spine surgery research as part of the Harms Study Group, which is supported by the Setting Scoliosis Straight Foundation, and adult spine surgery research as part of the International Spine Study Group.

Collaborating with other surgeons in these groups allows us to produce literature aimed at improving the surgical outcomes for the patients we care for.

As there is considerable evidence of executive dysfunction in this patient population in general (Brown et al., 2008; Fletcher, Brookshire, Bohan, Brandt, & Davidson, 1995; Mahone, Zabel, Levey, Verda, & Kinsman, 2002; Rose & Holmbeck, 2007; Tarazi, Zabel, & Mahone, 2008; Zabel, Jacobson, Zachik, Levey, Kinsman, & Mahone, 2011), we have proposed that the combination of increased adaptive skill requirements combined with the features of executive dysfunction observed in spina bifida create a unique self-care burden requiring both skill instruction and accommodation for executive deficits (Tarazi, Mahone, & Zabel, 2007).

At present, there are few specialized assessment tools available to evaluate self-care skills and self-management competency in spina bifida.

Two primary subscales were created, initiation of routines and prospective memory, which provide meaningful clinical information regarding management of a variety of typical (e.g., get up on time, complete daily hygiene routines on time) and spina bifida-specific self-care tasks (e.g., begin self-catheterization on time, perform self-examination for pressure sores).

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