Integument: Guidelines for the care of people with spina bifida

Beierwaltes, Patricia; Muñoz, Sharon; Wilhelmy, Jennifer

doi:10.3233/prm-200723

Cited by 4 publications

(2 citation statements)

References 19 publications

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“… Evidence [ 13 , 60 , 32 , 46 , 69 ] Encourage increasing responsibility for behaviors such as management of medication, bowel and bladder programs, and skin-monitoring. Evidence [ 21 , 23 , 66 , 70 , 71 ] Support development of skills necessary for self-management (e.g., decision-making, goal-setting, self-regulation, and communication). Evidence [ 6 , 16 ] Evaluate and monitor cognitive functions as they underpin decision-making, goal-setting, self-regulation, self-management, socialization, and transition issues.…”

Section: Introductionmentioning

confidence: 99%

“…due to poor fitting leg braces) and risk for wound-related hospitalization. Evidence [ 38 , 26 , 36 ] Integument [Skin} Guidelines [ 70 ] 3. Evaluate if the adult has expanded self-management to encompass everyday living activities such as laundry, meal preparation, managing finances, making health care appointment, and ordering supplies.…”

Section: Introductionmentioning

confidence: 99%

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Self-management and independence guidelines for the care of people with spina bifida

Logan

Sawin

Bellin

et al. 2020

PRM

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Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), they often lag 2–5 years behind their typically-developing peers in these activities [1]. Valid and reliable condition-specific assessments of self-management and independence are critical to optimizing outcomes for this population. Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on these assessments. The guidelines delineated in this article are informed by current self-management research for people with spina bifida and offer recommendations to promote self-management and independence across the lifespan.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Self-management and independence guidelines for the care of people with spina bifida

Logan

Sawin

Bellin

et al. 2020

PRM

View full text Add to dashboard Cite

show abstract

Transitioning care for adolescents with spina bifida in the US: challenges for management

et al. 2023

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User-Centered Design to Enhance mHealth Systems for Individuals With Dexterity Impairments: Accessibility and Usability Study

Chowdhary¹,

Yu²,

Pramana³

et al. 2022

JMIR Hum Factors

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Background Mobile health systems have been shown to be useful in supporting self-management by promoting adherence to schedules and longitudinal health interventions, especially in people with disabilities. The Interactive Mobile Health and Rehabilitation (iMHere) system was developed to empower people with disabilities and those with chronic conditions with supports needed for self-management and independent living. Since the first iteration of the iMHere 1.0 app, several studies have evaluated the accessibility and usability of the system. Potential opportunities to improve and simplify the user interface were identified, and the iMHere modules were redesigned accordingly. Objective In this study, we aim to evaluate the usability of the redesigned modules within the iMHere 1.0 app. Methods We evaluated the original and redesigned iMHere modules—MyMeds and SkinCare. The Purdue Pegboard Test was administered to assess the participants’ dexterity levels. Participants were then asked to perform a set of tasks using both the original and redesigned MyMeds and SkinCare modules to assess their efficiency and effectiveness. Usability was measured using the Telehealth Usability Questionnaire to evaluate 10 new accessibility features that were added to the redesigned app. Participants were also asked which version they preferred. Results In total, 24 participants with disabilities and varying degrees of dexterity impairments completed the entire study protocol. Participants displayed improved efficiency and effectiveness when using the redesigned modules compared with the original modules. The participants also reported improved usability and preferred the redesigned modules. Conclusions This study demonstrated that the iMHere system became more efficient, effective, and usable for individuals with dexterity impairments after redesigning it according to user-centered principles.

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Integument: Guidelines for the care of people with spina bifida

Cited by 4 publications

References 19 publications

Self-management and independence guidelines for the care of people with spina bifida

Self-management and independence guidelines for the care of people with spina bifida

Transitioning care for adolescents with spina bifida in the US: challenges for management

User-Centered Design to Enhance mHealth Systems for Individuals With Dexterity Impairments: Accessibility and Usability Study

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