Caring for the medically fragile is complex. This article provides an overview on treatment strategies to consider for young patients living with wounds and special needs.
The prevalence of chronic pressure ulcers tends to be associated exclusively with long-term care. However, treatment of pressure ulcers/chronic wounds occurs in a variety of settings that includes the home, acute care, long-term acute care, skilled nursing, and, more recently, outpatient settings such as wound clinics. In fact, a recent survey by the National Pressure Ulcer Advisory Panel (NPUAP) of United States-based practitioners staffed in pediatric outpatient services showed a high prevalence of pressure ulcers, at 72.5%. Children living with special needs (disabilities) are an especially high-risk population for pressure ulcers due to their compromise in several areas, such as acute and/or chronic illnesses; genetic malformations; incontinence; trauma; physical and intellectual disabilities; nonverbal and/or non-ambulatory traits; immobility; and neurological/genetic deficits, as well as sensate deficits and the reliance on medical device(s) meant to extend or improve life. That said, there are challenges encountered by wound care practitioners when treating pediatric pressure ulcers in an outpatient setting, including difficulties related to applying dressings to small anatomical locations and confounding comorbid complications (respiratory, gastrointestinal, cardiac, immune system, skin impairments, and fragility). Children living with special needs also often have confounding physical stressors that predispose them to pressure ulcers, such as respiratory insufficiency (eg, tracheotomies, ventilator dependency), orthopedic deformities (eg, scoliosis, kyphosis, contractures, congenital malformations, etc.), neurological impairments (eg, hypoxic ischemic encephalopathy), congenital heart defects, congenital or acquired gastrointestinal comorbidities (eg, short bowel syndrome, necrotizing enterocolitis, esophageal atresia/fistulas, etc.), thus impairing the ability to eat normally, speak, and have independent mobility. If the patients’ caregivers (parents/legal guardians) are not fully informed as to the risk factors, that alone then becomes one more risk for this patient population.
This article will address some strategies for wound care clinicians to consider when faced with the challenges present when providing care for this patient population by offering suggestions for approaches to care and treatment models in the outpatient setting.
Pediatric Pressure Ulcer Protocol
The NPUAP now defines “pressure ulcers” as “pressure injuries,” which are characterized as localized injury to the skin and/or underlying tissue, usually over a bony prominence. Three things encompass comprehensive care of pressure ulcers in children living with special needs: 1) identification of risk factors, 2) prevention, and 3) treatment. All three must be addressed simultaneously throughout the care of the child and be reinforced as children grow older and/or their medical status changes (for better or worse). When determining how to best establish a care plan for pressure ulcer/wound care, the two most important areas of consideration include activities of daily living and nutrition, as these areas help foster identification of risk factors, assist in active healing, and play key roles in prevention.
When choosing treatment(s) for pediatric pressure ulcers it is key to troubleshoot factors that increase risk as well as to use a sense of creativity when considering ways to prevent and treat. Children come in all sizes and with various types of special needs, including behaviors that will impact applications of dressings. For example, children exhibiting self-stimulating behaviors may have the tendency to pull — perhaps to the point of removing — anything tactile from their skin. In this situation it becomes crucial for the clinician to provide input and suggestions as to the mode of treatment. For any child living with special needs who presents to the outpatient wound clinic for pressure ulcer/wound treatment, a dedicated part of the visit, in addition to the physical assessment, should be the evaluation of the patient for indicators of deficits to medical, nutritional, and emotional status. While it’s understood in the outpatient setting that a clinician’s time with a patient during visits may be limited, the flipside is these providers often have the opportunity for multiple follow-up visits, which should mean increased opportunity for education, reinforcement of that education, and general support of care. Clinical outpatient settings are also great resources in that providers can assist in connecting patients and caregivers with needed allied services, such as durable medical equipment (DME).
A thorough “interview” with the child as well as the caregiver that raises key questions about the child’s daily routine will help clinicians understand all areas of need the child and the caregiver are experiencing. Questions to consider include, but are not limited to: What are the types of activities the child participates in during daytime and evening hours? How are the child’s eating and sleeping habits? Are there any known allergies? What types of ongoing care does the child receive at home and/or in the outpatient setting beyond wound care? How often does the child see a primary physician and/or a specialist? With a comprehensive discussion, wound care clinicians can better identify risk factors that could lead to future pressure ulcers by acknowledging triggers related to activities of daily living while providing education to reduce these precipitating factors.
For children who are nonverbal and cannot give spoken cues for pain, it is important to understand their nonverbal communication tendencies by asking their caregivers for clarification on their behaviors, which the clinician should document. Cues such as smiling, frowning, stretching of arms towards objects, head movements, etc. usually indicate communication of some emotion and/or physical state.
Clinicians must heighten their ability for observation while speaking, touching, and interacting with patients and caregivers by noticing changes in the child’s emotional or physical state. The clinician can then interpret or ask for clarification as needed. A helpful tool to measure pain when nonverbal communication is the standard is the FLACC (Face/Legs/Activity/Cry/Consolability) scale,1 which measures behaviors (typically among those younger than age 3 due to a general lack of speaking ability) such as facial expressions, leg positions, squirming, and crying. Areas of assessment are then scored for a specific level of discomfort and/or pain.
The outpatient clinic visit becomes a more integral part of ongoing pressure ulcer care because the child’s conditions tend to change in the home setting, especially among the special needs and medically fragile population. For example, time spent in a wheelchair can be problematic for wound healing since the child may not be able to shift weight appropriately while sitting. Additionally, just because a child is using a particular wheelchair does not guarantee the device is the most appropriate option. This author recently cared for a child who presented in a medically fragile condition and had developed stage IV pressure ulcers on bilateral trochanters due to a wheelchair that was too small. While it could be assumed this would stand as a case of neglect, matters were further complicated because the child’s guardian was ill and struggled to take the child to all appropriate appointments/specialists, including those who could help with DME. Those providers who anticipate and/or witness similar situations of any kind should attempt to help coordinate proper DME care.
When ordering DME, specifically wheelchairs, it becomes imperative to advocate for the disabled child through the insurance company by striving to achieve the goal of tailoring DME to the child’s specific needs. Skin requires air-oxygen interchange, good circulation, and balanced moisture in order to remain healthy, so the material of a wheelchair should be permeable and not increase heat to the skin. Seat cushions surely will require some enveloping modality because some stiffness can occur when sitting for long periods of time. When looking for a DME company to order materials from it’s advisable to work with manufacturers who offer customizing and who are willing to guide clinicians towards appropriate customization (ie, meeting medical necessity).
When relationships are developed between the healthcare provider, the caregiver, and the child the interview process becomes expeditious and instrumental in the prevention of pressure ulcers. Too often parents feel pressured to help their child to stay at optimum health and, if this does not happen, may feel inadequate, especially if the understanding of the disease processes becomes too complex. These medical complexities in the pediatric special-needs population are generally difficult for a parent/guardian to understand because the disease processes may shift and change as the child grows.
Notes on Nutrition
Another component of the pediatric patient’s interview process to be included with each visit is nutrition. Asking the caregiver and the child (when verbal communication is possible) about specific meals eaten on a daily basis, as well as meal times, is advised.
Clinicians should get an understanding of what and when the child eats, who’s preparing the food, and how well (or not) the child is tolerating meals. Many times caregivers believe if a child’s weight is considered “healthy” then his/her nutrition is healthy as well. This is not always true. Too often clinicians may find the child to be experiencing emesis episodes, abdominal distention, bowel-movement irregularities, and/or general discomfort when eating related to a disease processes or medication regimen. Kirsten L. Thompson et al provide nutritional interventions to optimize pediatric wound healing.2
Pediatric Prevention Practices
Pressure ulcer prevention begins with accurate assessment to identify an at-risk patient. Early intervention can be an effective preventative measure if patients at increased risk for pressure ulcers are identified.3 Preventing pressure ulcers in the pediatric special needs population requires identification and intervention on high-risk circumstance. Some items that may be identified and require intervention towards prevention include optimum weight (not just body-mass index but using actual weight and height in context of this number). Keep in mind when taking the anthropometrics of children living with special needs that it will be done with different techniques, but it is extremely important that it be done the same way each time in order to trust the readings. For example, the patient’s weight might be measured in the wheelchair each time in an attempt to help keep the child comfortable by taking into account the weight of the wheelchair and then subtracting the chair weight from the total weight. It’s important to take into consideration the amount of clothing the child is wearing, which should remain consistent each time the child is weighed for accuracy’s sake. In children living with deformities/contractures, clinicians should measure by segment (head to neck/shoulder to sacrum/leg to thigh/knee to foot) and add figures accordingly.
When weight is measured the same way each time, clinicians are offered an accurate baseline as well as measurements that aid in identifying risk factors by trending results. Other preventative factors include general healthiness of skin (ie, atopic dermatitis, seborrhea, surgical scar tissues — especially those requiring recurrent surgeries to the same anatomical locations — and types of scars [eg, keloid versus nonkeloid], previous pressure ulcer locations, incontinence-associated dermatitis, etc.).
Once risks are identified, clinicians should consider preventative measures such as appropriate bedding/mattresses at home (eg, foam-layered mattresses, moisture-control mattress covers, total air mattresses, air mattress overlay) appropriate seating systems, (eg, wheelchairs, customized beanbags), appropriate tailored orthoses for optimum alignment (eg, ankle/foot orthoses, trunk/lumbar sacral orthoses, neck orthoses), appropriate nutrition (eg, meeting the child’s caloric needs in context with energy expenditure). For instance, a child living with spasticity will have higher energy expenditure than a child without spasticity.
It might be assumed the primary care physician has all of these areas covered during routine checkups, but wound care providers and all specialists should consider themselves part of the healthcare team/family taking care of the child from a comprehensive approach. All healthcare providers should make it a point to ask the questions that should be asked in the primary care office as well as in their specialty practices in an effort to offer patients and caregivers the opportunities to speak with several team members. Consulting with rehabilitation, dietary, physical therapy, and occupational therapy staff members for suggestions and guidelines among these matters should also be beneficial in the clinic setting.
Identification of high-risk children living with special needs for future pressure ulcers is a first line of defense against further wound development. That said, part of the outpatient visit should also be to identify interventions that may be implemented to prevent pressure ulcers, especially among vulnerable children.
Offering caregivers literature such as pamphlets on pressure ulcers as well as information on improving awareness and physical inspection in the home setting allows for a proactive role in the prevention of pressure ulcers. Avoiding friction and shear when transferring or changing the child’s dressing, as these are two forces that contribute to the vulnerability of tissue tolerance as part of the pressure ulcer processes, is a sound preventative measure as well.
The focus of treatment for pressure ulcer wounds in children living with special needs follows the guidelines of moisture wound healing and the recommendations of the NPUAP when identifying pressure ulcer stages based on visualized tissue in the open wound identified at the time of encounter (eg, necrosis, granulation, eschar, skin loss [partial or full], muscle, fascia, and bone). When assessing a pressure ulcer wound in children, “the basics” are still the basics: wound location; measurements (in centimeters)/height/width/depth; tissue viability being present or absent; exudate; odor, associated pain; condition of surrounding skin. As the wound is treated these basics should be documented and trended to demonstrate healing or deterioration of the wound at each visit. Maintaining a moist wound environment facilitates the wound healing process.4 Remember, the NPUAP recently announced updates to the stages of “pressure injuries.”5
Options for effective products in the outpatient wound clinic for the pediatric population have increased and improved, especially for wounds that may build biofilm frequently with stalled healing progression, as companies have adapted many products to this cohort.
Many manufacturers now offer products in smaller sizes and/or that have the ability to be cut without interrupting the integrity of the dressing/treatment. Additionally, many of today’s products are better designed to protect fragile skin in anticipation of keeping skin intact (eg, avoiding adhesive stripping of the epidermis). It’s incumbent upon clinicians to understand the mechanism of action for each product chosen and to maintain knowledge of emerging products and what the market has to offer.
Margie Rodriguez is director of continuity of care at Elizabeth Seton Pediatric Center, Yonkers, NY. She’s been wound certified for 10 years and specifically treats children living with special needs. She’s also a member of the American Nurses Association, New York Nurses Association, and Wound Care Education Institute. She has no financial disclosures to mention.
1. FLACC Scores. National Hospice and Palliative Care Organization. Accessed online: www.nhpco.org/flacc-scores
2. Thompson KL, Leu MG, Drummond KL, Popalisky J, Spencer SM, Lenssen PM. Nutrition interventions to optimize pediatric wound healing: an evidence-based clinical pathway. Nutr Clin Pract. 2014;29(4):473-82.
3. Butler CT. Pediatric skin care: guidelines for assessment, prevention, and treatment. Dermatol Nurs. 2007;19(5):471-2,477-82,485.
4. Field FK, Kerstein, MD. Overview of wound healing in a moist environment. AM J Surg. 1994;167(1A):2S-6S.
5. National Pressure Ulcer Advisory Panel (NPUAP) Announces a Change in Terminology From Pressure Ulcer to Pressure Injury and Updates the Stages of Pressure Injury. NPUAP. Accessed online: www.npuap.org/national-pressure-ulcer-advisory-panel-npuap-announces-a-change-in-terminology-from-pressure-ulcer-to-pressure-injury-and-updates-the-stages-of-pressure-injury