Lifestyle Changes and Pressure Ulcer Prevention in Adults With Spinal Cord Injury in the Pressure Ulcer Prevention Study Lifestyle Intervention

Life and Medical History

Mario was born in a city near Los Angeles to working class parents. His background story appears challenging. As a child, he was physically abused by his alcoholic father; in his adolescence, he used drugs and alcohol and dropped out of school; and by the time he was 30, he had married twice and fathered five children. Mario sustained a T1 SCI at age 35, secondary to a gunshot wound during an argument with a family member. After the injury, Mario developed depression that lasted approximately 3 yr. He later became a concert promoter and community activist, raising money for youth and senior citizens.

About 6 yr after his SCI, Mario was involved in a motor vehicle accident that left him with severe shoulder and leg injuries requiring surgery. During this hospitalization, he sustained his first PrU on his right buttock. He described this experience in the following way: “They did not turn me, and I couldn’t feel my femur … I did not want to move or be moved, plus I could not move certain areas.” This PrU progressed to a Stage 4 but eventually healed without requiring surgery.

Intervention Goals and Progress

Mario began intervention 7 yr after his SCI, with a healing Stage 4 PrU. He also had fungal infections on his buttocks and thighs and frequent muscle spasms. Because of severe shoulder pain and increased weight, Mario was unable to perform pressure reliefs effectively, lessening the likelihood of closing his PrU. When he started the intervention, Mario needed surgery on his shoulder to repair damage caused by his car accident 2 yr before, but his doctors had postponed the surgery to avoid limiting his functional abilities and inhibiting PrU healing. Additional factors that increased Mario’s PrU risk included lack of accessibility to transportation, inadequate equipment, poor communication with health care professionals, inadequate transfers, poor bladder and bowel management, and the need for caregiver support for pressure reliefs and home management.

Mario was very engaged in the intervention; he independently identified all of his risk factors and collaborated with his intervener in developing a personal PrU prevention plan. The intervention focused on increasing his self-advocacy skills, losing weight, learning to better manage his PrU and SCI by acquiring needed medical supplies and caregiver support, and improving his ability to monitor his skin integrity and wound healing.

Unfortunately, Mario suffered three additional major challenges during the intervention. First, his son was murdered, causing Mario to become depressed. Second, he had his shoulder surgery, which consequently restricted his mobility and posed a greater need for assistance in his daily routines while he recuperated. Third, while in the hospital after his shoulder surgery, he developed a Stage 2 PrU on his right hip.

Intervention Outcome

Despite his challenges, Mario was able to make lifestyle changes to enhance his health. During the intervention, he achieved most of his identified goals: improving his self-advocacy skills, losing 20 pounds by making healthy diet choices, learning to order and use adaptive equipment effectively to attend to his PrU status, and improving his ability to monitor his skin integrity and wound healing by using a digital camera. Most important, in spite of undergoing several difficult life events during the intervention, Mario was able to adopt lifestyle changes that enabled him to successfully heal his PrUs without surgical intervention.

Life and Medical History

Moses was born and raised in a small town near Los Angeles. His biological parents divorced when he was a baby, and his mother remarried twice. Moses had one older sister and several step-siblings with whom he maintained good relations. Although Moses was considered a “good kid” who stayed out of trouble most of the time, he dropped out of high school halfway through his senior year. As a young adult, he worked several blue-collar jobs, was married and divorced twice, and fathered four children.

When he was 25 yr old, Moses sustained T7 complete paraplegia as a result of a motor vehicle accident while intoxicated. During the 30 yr between his SCI and the start of the intervention, Moses had numerous serious PrUs on his trochanters and ischial tuberosities and underwent five flap surgeries. In addition, he had a left Girdlestone procedure (i.e., removal of the hip joint) about 2 yr after his SCI, a hip disarticulation amputation of his left leg 15 yr postinjury, and a right Girdlestone procedure secondary to osteomyelitis 2 yr before entering the PUPP intervention. In the months before the intervention, Moses developed a superficial PrU on his left ischium while in the intensive care unit for a severe bone infection. This PrU worsened to become Stage 3 as a result of inadequate pressure reliefs.

Moses’ social history since his injury revealed serious challenges. Despite his divorces, he stayed in touch with all of his children and was particularly close with two of them. However, 4 yr before intervention, one of his sons, mistaken for a gang member, was murdered in a gang-related shooting. This led Moses to feelings of depression and hopelessness. In addition, he had lost part of his support system because the son who was murdered had lived with him and been an important source of emotional support. Despite this loss, Moses maintained a large social network that included his mother, his other three children, his grandchildren, and his first wife and her family.

Intervention Goals and Progress

At the start of intervention, Moses was 58 yr old and lived with his mother in his own living space separate from the larger household. He was well cared for by an attendant for 5 hr per day and by his extended family. Moses’s risk factors included fragile skin as a result of an extensive history of PrUs and surgeries, insufficient knowledge about how to manage his medical needs, limited literacy and writing skills restricting his ability to manage medical documents, inadequate equipment, and depression.

Moses began intervention with a preexisting healing Stage 3 left ischial PrU. Healing this wound was the major focus of the intervention. The intervener collaborated with Moses by assisting him with managing medical forms, obtaining and using equipment such as a multichamber air wheelchair cushion and a vibrating watch to monitor his sitting time, and maintaining a paper calendar to keep a log of his medical appointments. In addition, the intervener and Moses discussed adequate nutrition for tissue healing, and Moses adopted a healthy and protein-rich diet.

Moses experienced three setbacks during the intervention that challenged his health, yet paradoxically served as beneficial learning experiences. First, because of his history of osteomyelitis, Moses had to undergo a bone scan. Positioning for the bone scan caused his left ischial PrU to deepen. Second, during two consecutive visits to a wound clinic, two doctors disagreed about whether he should get “a little flap” surgery to close his PrU or a negative-pressure wound-healing device, which caused delays in implementing a successful care strategy. Ultimately, he used the negative-pressure device, which he preferred over surgery. Third, a suture line from a previous surgery opened in his buttock region. His surgeon recommended, and Moses agreed, that he undergo surgery to close both this wound and the ischial PrU.

As the intervention progressed, Moses learned different PrU management methods and incorporated them into his daily routines. For example, he began to wear an alarm watch to remind him to perform pressure reliefs in a timely manner, and he adopted the strategy of sitting up for shorter time periods. Moses increased his understanding of the health care system and how to advocate for himself in health care encounters. He was also able to identify his grief over the death of his son and subsequent depression and was interested in pursuing counseling once he had adequate sitting tolerance to attend weekly sessions.

Intervention Outcome

At the end of the intervention, Moses’s left ischial PrU had decreased in depth but had not healed completely and ultimately required surgery. Although Moses had adopted healthy habits during the intervention, they were not sufficient to heal his PrU, apparently because of a confluence of extenuating circumstances. Thus, he was a good example of someone who followed the intervener’s recommendations about lifestyle changes, but these changes did not translate into appreciable changes in his PrU.

Life and Medical History

Raul was born and raised in the southwestern United States. His childhood was unstable, and he left home as a teenager to escape abuse. Two yr later, he moved in with an uncle in California and earned his general educational development (GED) certificate and a certificate in cement masonry. He moved several times over the next few years, partially for work and partially to escape gang activity. At the age of 18, Raul sustained an SCI caused by a gunshot wound incurred during gang violence, resulting in T12 complete paraplegia. After the injury, he used drugs for 20 yr; was homeless for at least 4 yr; and never held a job, got married, or had children.

Since his SCI, Raul reported having developed 15–20 PrUs on his buttocks, ankles, tailbone, and feet, all of which advanced to Stage 4 and resulted in flap surgeries. He stated he developed these PrUs because he was homeless and dirty, wore shoes without socks, had swollen legs, did not attend doctors’ appointments, did not check his skin, used drugs, did not have adequate caregiving, spent too much time in his wheelchair, and was depressed. He had a right total leg amputation because of hip osteomyelitis, a colostomy, and insertion of a supra-pubic catheter. At the start of intervention, he had three PrUs and was taking medications for hypertension, spasms, and pain.

Intervention Goals and Progress

At the outset of intervention, 30 yr after his SCI, Raul indicated a lack of willingness to make lifestyle or behavior changes. During the first session, he stated, “I know what I have to do … I already know this.” He appeared distracted and displayed cognitive deficits, such as poor attention, eye contact, and listening skills, along with memory deficits possibly acquired from his history of drug abuse. These limitations interfered with the intervener’s ability to build rapport and hampered progress during the course of intervention.

The intervener noted several factors putting Raul at high PrU risk. He had a manual wheelchair with a missing footrest, posing a risk of skin tears because of unsafe positioning. Additionally, his home had poor accessibility, making him prone to injury from jarring movements and bumping into things. For example, the only accessible entrance into his house required him to travel across 6 yd of dirt terrain, and the hallways and doors of his home were narrow. Moreover, Raul’s financial resources were insufficient to fulfill his equipment needs. Finally, although he performed pressure reliefs fairly regularly, he did not limit his sitting time. Raul, however, also had several strengths at the start of intervention: Access Paratransit services (which provides transportation around Los Angeles for people with disabilities), making it relatively easy for him to travel to and from medical appointments and other activities; knowledge about resources for obtaining supplies; good communication skills; and adequate understanding of health care services.

Raul entered the intervention with venous stasis ulcers on his medial ankles, unstageable PrUs on his left plantar heel and left big toe, and a Stage 2 PrU on his left ischial tuberosity. The focus of the intervention was on healing these wounds and preventing future PrUs. To accomplish these goals, the intervener tailored the program to meet Raul’s needs, including practicing transfers and reducing sitting time. When Raul developed shoulder pain during the intervention, the intervener advised him to exercise regularly and obtain an overhead trapeze for transfers, both of which Raul did. In addition, he increased his time spent lying in bed to avoid stress on his shoulders.

Despite this limited progress, overall, Raul did not make substantive changes specifically targeted toward PrU prevention and maintained an attitude of indifference throughout the intervention. The few lifestyle changes he made were in response to his shoulder pain, and their contribution to his PrU improvement was incidental. Therefore, in the context of this PrU prevention intervention, these changes were considered minimal. One explanation why Raul did not fully comply with the strategies suggested by his intervener is that although he had a fair understanding of healthy behaviors, his attention deficits limited his ability to maintain those behaviors. Moreover, he had limited social and caregiver support to help him with his daily routines.

Intervention Outcome

At the end of intervention, Raul’s venous stasis ankle ulcers had improved and the unstageable PrUs on his left heel and left big toe had healed. Raul’s behavior change (lying in bed more) in response to his shoulder pain eventually contributed to improvement of his ischial PrU, though it did not heal completely. Thus, he was an exemplary case of someone who made minimal lifestyle changes and still improved his PrUs.

Life and Medical History

Andy was born and raised in Los Angeles. At age 16, he was a victim of a drive-by shooting, causing T5 complete paraplegia. After his injury, he dropped out of high school and underwent rehabilitation for 3 mo, becoming independent in his self-care. Andy had an extensive medical history after his SCI. Between ages 20 and 30, he had multiple flap surgeries, primarily on his ischial tuberosities and trochanters, because of inadequate self-care. He had urostomy and colostomy procedures to promote healing and prevent new wounds in the buttocks area and bilateral Girdlestone procedures secondary to bone infection. A chart review revealed several more flap surgeries during his 30s, culminating with surgery on his bilateral ischial tuberosities at age 39. Because of his extensive surgical history, Andy had very little healthy tissue left and was told that he would lose his leg if he required any more flap surgeries.

Intervention Goals and Progress

At the beginning of intervention, approximately 1 yr after the flap surgery on his ischial tuberosities, Andy had a healing Stage 3 PrU on his right heel. Andy’s skin was fragile and uneven because of numerous past surgeries and substantial scar tissue, but he had had no skin breakdown on his buttocks since his most recent surgery. He stated that the threat of amputation had motivated him to prevent serious wounds from developing and the need for future flap surgeries. Andy lived with his mother in stable housing and reported having a supportive network of family and friends with whom he loved to spend time. He reported smoking half a pack of cigarettes per day, drinking occasionally, and smoking medical marijuana about once a day to control spasms. He loved to drive, and he cruised around his neighborhood for hours at a time.

In the first session, Andy made it clear that he was not interested in the intervention and had hoped to be in a placebo group. He received numerous phone calls during the first session, which restricted the intervener’s ability to build rapport. His attitude suggested a lack of readiness to change and unwillingness to cooperate with the intervener, both of which continued throughout the intervention. However, Andy identified his main goal in the intervention as staying in bed to heal the PrU, with secondary goals of applying for Section 8 housing assistance and obtaining his GED certificate. The intervener tailored the intervention to assist him in achieving these goals, focusing on educating Andy regarding unhealthy behaviors and the need to stay in bed to heal his existing PrU.

Although Andy demonstrated adequate knowledge of PrU prevention and health management techniques such as safe transfers and pressure relief strategies, he did not perform them enough to improve his skin’s health during the intervention. Although he understood the benefits of wearing the protective heel boot that the intervener gave him in the second session, Andy stated that he would wear it only in bed or possibly in his wheelchair, and only if the PrU on his heel did not progress as per his expectations. Additionally, he was advised by the intervener to wear sweatpants to avoid shearing; he tried them but was noncommittal about wearing them regularly. Moreover, he was not interested in adopting any system to remind him in a timely manner to do his pressure reliefs. Finally, and most important, he frequently told the intervener he had reduced his sitting time to 3–4 hr daily to heal his PrUs; however, the intervener learned from Andy’s mother during the last sessions that Andy was in fact sitting up to 10 hr daily.

Andy demonstrated a general lack of motivation and interest in maintaining healthy habits in other ways. His multiple daily car transfers were hasty and jarring, which increased the risk on his skin condition. He discussed with his physician the possibility of quitting smoking but later told the intervener that he was not really going to do so. Finally, he stated that he wished to visit the PrU Management Service clinic at RLANRC but did not call to schedule an appointment until the intervener reminded him repeatedly.

Andy’s risky practices negatively affected his PrU status. Although the PrU on his right heel closed during intervention, in that time he also developed a Stage 2 PrU on his right ischium at the site of a previous flap surgery. This PrU worsened in spite of the intervener’s efforts and regular medical care. By the end of intervention, this PrU had deteriorated to Stage 3 and resulted in a surgery referral from a PrU–SCI specialist. He also developed a small Stage 1 PrU on his left heel, which did not heal or improve by the end of intervention because he did not adhere to wearing protective boots.

Intervention Outcome

Andy exemplified a participant who did not change his lifestyle or behaviors in conjunction with intervention and whose wounds worsened. He did not comply with the intervener’s or other health care professionals’ recommendations or try to achieve his intervention goals. He exhibited a lack of engagement in intervention, and caring for his wounds was a low priority. Although he healed one small Stage 2 PrU on his right heel, he developed two additional PrUs that worsened and ultimately required flap surgery.