Data-Based Models of How Pressure Ulcers Develop in Daily-Living Contexts of Adults With Spinal Cord Injury

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RIGINAL ARTICLE

ata-Based Models of How Pressure Ulcers Develop inaily-Living Contexts of Adults With Spinal Cord Injury

lorence A. Clark, PhD, Jeanne M. Jackson, PhD, Michael D. Scott, MD, Mike E. Carlson, PhD,
ichal S. Atkins, MA, Debra Uhles-Tanaka, MA, Salah Rubayi, MD
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ABSTRACT. Clark FA, Jackson JM, Scott MD, CarlsonE, Atkins MS, Uhles-Tanaka D, Rubayi S. Data-based mod-

ls of how pressure ulcers develop in daily-living contexts ofdults with spinal cord injury. Arch Phys Med Rehabil 2006;7:1516-25.

Objective: To examine the daily-lifestyle influences on theevelopment of pressure ulcers in adults with spinal cord injurySCI).

Design: Qualitative investigation using in-depth interview-ng and participant observation.

Setting: Participants were studied in their homes and otheraturalistic contexts.Participants: Twenty men and women of diverse ethnicities

ith paraplegia or tetraplegia who were recruited at a pressurelcer management clinic in a large rehabilitation facility.Interventions: Not applicable.Main Outcome Measures: Detailed descriptive information

ertaining to the development of recurring pressure ulcers inelation to participants’ daily routine and activity, personalhoices, motivating influences, lifestyle challenges, and pre-ention techniques and strategies.Results: The daily-lifestyle influences on pressure ulcer

evelopment in adults with SCI can be described througharious models that vary in complexity, depending on whetherhey incorporate individualization, interrelations among mod-led elements, situational specificity, and/or temporal compre-ensiveness. Ulcers are most likely to develop when a personith a relatively high-risk background profile is exposed to an

quilibrium-disrupting change event that culminates in a spe-ific pressure ulcer risk episode.

Conclusions: The results underscore the significant degreef complexity and individualization that characterize the emer-ence of pressure ulcers in daily-life contexts. Prevention ef-orts should therefore incorporate attention to the unique con-tellation of circumstances that comprise a person’s everydayife.

Key Words: Lifestyle; Pressure ulcer; Primary prevention;ehabilitation; Research; Spinal cord injuries.© 2006 by the American Congress of Rehabilitation Medi-

ine and the American Academy of Physical Medicine andehabilitation

From the Division of Occupational Science & Occupational Therapy, University ofouthern California, Los Angeles, CA (Clark, Jackson, Carlson); and Rancho Losmigos National Rehabilitation Center, Downey, CA (Scott, Atkins, Uhles-Tanaka,ubayi).Supported by the National Institutes on Disability and Rehabilitation Research, US

epartment of Education (grant no. H133G000062).No commercial party having a direct financial interest in the results of the research

upporting this article has or will confer a benefit upon the author(s) or upon anyrganization with which the author(s) is/are associated.Reprint requests to Florence A. Clark, PhD, OTR/L, Division of Occupational

cience & Occupational Therapy, University of Southern California, 1540 Alcazar St,HP-133, Los Angeles, CA 90089-9003, e-mail: [email protected].

t0003-9993/06/8711-11143$32.00/0doi:10.1016/j.apmr.2006.08.329

rch Phys Med Rehabil Vol 87, November 2006

RESSURE ULCERS ARE A COMMON complication ofspinal cord injury (SCI).1 Among adults with SCI, the

ncidence of such ulcers ranges from 23% to 33% or more perear and up to 95% over the course of a lifetime.2-4 SCI-relatedressure ulcers can lead to medically significant problems suchs advanced infection5 and, when significantly developed, haveeen associated with surgery costs of $70,000.6 In addition, thehreat of pressure ulcers represents a potential challenge to thebility of patients with SCI to experience a full and satisfyingife.1,7

Models of pressure ulcer development in the SCI populationnclude conceptual schematics of the interplay of relevanthysical parameters,8 as well as research-based approaches thatighlight various bodily, demographic, and lifestyle and be-avioral risk factors.2,6,9-11 Risk factors include variables suchs injury completeness, presence of additional medical condi-ions, prior history of ulcers, advanced age, lack of high schoolducation, unemployment, smoking, unhealthy dietary habits,ack of fitness, and difficulty performing skin care procedures.nfortunately, however, in some cases, contradictory resultsave been obtained and, furthermore, there exists no overallodel that describes how the variables combine to affect ulcer

evelopment.Various tools such as the Braden scale and the Norton scale

ave been devised to measure ulcer risk in clinical popula-ions.1 However, evidence for the effectiveness of these scaless mixed,12-14 and their usefulness in the SCI population is notstablished.15 A scale developed by Salzberg et al16 is specificor adults with SCI but devotes little attention to psychosocialisk factors and has not been sufficiently tested. At present,here is a need to develop more highly refined pressure ulcerisk assessments for adults with SCI.

In the present investigation, we seek to build on prior worky pursuing a qualitative study of how complex configurationsf risk-relevant factors affect ulcer outcomes within the every-ay lives of persons with SCI. A key aim of our research is toomplement existing knowledge of general predictive relationsy examining the complex determinants of ulcers within ho-istically construed individual lives. The identification of indi-idualized patterns of ulcer risk promises to fill a gap inxisting knowledge because the nature and frequency of suchffects is not well understood. In addition, a qualitative ap-roach can potentially enable documentation of how combina-ions of factors or events can lead to ulcers in concrete daily-iving situations.17 Furthermore, because qualitative methodsre useful for exploratory purposes, they can be used to identifyew variables that can be tested in later quantitative research.18

The purpose of this article is to report models of pressurelcer development that were identified by using qualitativenterviewing and observation. In a general sense, we hypothe-ized that, when considering adults with SCI on an individualasis, it is possible to identify a dynamically interconnectedeb of physical, psychologic, social, and environmental influ-

nces that determine pressure ulcer outcomes. We anticipated
hat such knowledge about how ulcers develop in daily-life

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1517MODELS OF PRESSURE ULCER DEVELOPMENT IN SCI, Clark

ettings can have important implications for interventions de-igned to prevent or manage ulcers.

METHODS

esignThe research methodology involved the use of holistic eth-

ography, a qualitative approach that is based on accessing theocial worlds of research participants to examine the constel-ation of interacting influences that affect phenomena of inter-st.19-21 Toward this end, a chief intent of the design was tonable our researchers to become intensively familiar with theveryday lives of the participants through prolonged contact inheir daily life settings, and thereby achieve a carefully developednderstanding of their experiences relevant to pressure ulcers.

articipantsThe research participants were 19 adults with SCI and one

ith transverse myelitis who were recruited at the Rancho Losmigos National Rehabilitation Center’s (RLANRC) Pressurelcer Management Program. The Pressure Ulcer Managementrogram provides services to approximately 180 inpatients and000 outpatients per year. The majority of these patients havetage III (subcutaneous tissue exposed) or stage IV (muscle andone exposed) pressure ulcers.To facilitate in-depth exploratory probing of lifestyle in

elation to pressure ulcers, we sampled verbally fluent, cultur-lly diverse people with prior personal experience in dealingith pressure ulcer risk. The following study enrollment crite-

ia were used: (1) 18 years of age or older, (2) English orpanish speaking, (3) at least 1 year postinjury or disease onset,4) previous completion of acute rehabilitation services foraraplegia or tetraplegia, (5) prior treatment at RLANRC for ateast 1 serious (stage III or stage IV) pressure ulcer (for theurpose of contrast, 1 previously ulcer-free participant was in-luded in the sample), and (6) residence within 144km (90 miles)f RLANRC. The requirement of having at least 1 previouslcer reflected our desire to include people who were (1) ableo recount past experience with the problem and were (2) atelatively high risk to develop ulcers over the course of thetudy so that the process events surrounding current ulcersould be examined. Thus, the sample is not representative ofhe general SCI population but reflects a highly diverse group withsignificant potentially ongoing problem with pressure ulcers.Prospective participants were referred for inclusion by project

eam members from RLANRC. In selecting participants,niversity of Southern California and RLANRC investiga-

ors met monthly with the goal of achieving a heterogeneousample to fulfill the criterion of “maximum variation”18,22

ith respect to ethnicity, age, sex, socioeconomic status (SES),ype of injury (paraplegia vs tetraplegia), age at injury, yearsince injury, number and severity of previous pressure ulcers,nd educational level. The rationale for using maximum vari-tion sampling is that this procedure, by guaranteeing a highevel of differentiation on numerous relevant variables, in-reases the potential to identify diverse influences on pressurelcer risk, a key aim of the investigation. The drawbacks ofaximum variation sampling are that it is nonrandom and

ubject to overemphasis on extremes.Before enrollment, all participants were contacted in person

y a project coinvestigator at the RLANRC Pressure Ulceranagement Program. Each participant was provided with an

n-depth explanation of the study, was given a copy and verbalxplanation of the Research Participant’s Bill of Rights, andigned an informed consent form. Each participant received a
tipend of $200 per year of study involvement. o
In addition to the main study participants, some primaryaregivers or other nonprofessionals (eg, family members)nvolved with selected participants’ health care were also in-erviewed to provide additional perspective. All collateral in-erviewees underwent the full informed consent process beforeheir study participation.

ata CollectionData were collected between 2001 and 2003 by 2 coauthors

FAC, JMJ) and 4 research assistants (1 PhD, 3 doctoraltudents) with prior exposure to qualitative research method-logy. Each member of the data collection team was individ-ally assigned between 1 and 8 participants with SCI. Tonhance rapport, an attempt was made to provide a racial andthnic match between the researcher and respondent. Suchatching was achieved for 95% (19/20) of the participants.For all participants, based on available medical information

nd preliminary interviewing, information was obtained on theollowing variables: sex, ethnicity, level of injury, complete-ess of injury, age at injury, year of injury, education level,umber of previous stage 3 or 4 ulcers, number of previoususcle flap surgeries, lifestyle and employment, caregiving

ituation, use of adaptive equipment, sources of social support,kin condition, presence or absence of substance abuse, andeight status. SES was also assessed, based on a combinationf interviewer observations and zip code identification. Thisreliminary information was considered in guiding interviewsnd interpreting the study results for each participant.

Data-collection sessions involved the use of in-depth un-tructured interviews and participant observation. In-depth in-erviewing consisted of obtaining information during lengthyiscussions of issues pertinent to daily lifestyle and pressurelcers. Participant observation was undertaken by conductingessions in which the researcher accompanied the participanturing the enactment of his/her daily routine. The focus ofnquiry included both an historical and real-time (ongoingresent) analysis of pressure ulcers.The interview data included, but were not limited to, narra-

ive information in the form of “stories” told by the participantsbout their pressure ulcer histories, histories of involvementith personally important daily activities, and treatment

tories.19 These stories were solicited to yield insights into theveryday intuitive theories held by respondents about whyertain events or consequences occur in their lives.23,24

Data-collection sessions lasted from 1 to 4 hours and aver-ged 2 hours. The number of sessions per participant variedrom 3 to 23 (average, 11.5 sessions; 19.6 total contact hourser participant). Reasons for discontinuing the sessions wereersonal scheduling problems (n�2), death of participantn�4), and end of data-collection phase of study (n�14). Theverage per participant data-collection window was approxi-ately 18 months. Interviews were conducted in participants’

omes (�55%), at RLANRC inpatient or outpatient clinics�30%), or in other contexts (�15%) such as worksites,killed nursing facilities, restaurants, automobile trips, or onhe telephone. Over the course of the study, 27 new pressurelcers occurred among the 20 participants, with 4 of theselcers requiring hospitalization. When researchers learned thatgiven participant had been hospitalized for a pressure ulcer,

nterviews were conducted in the hospital to carefully docu-ent the subject’s perceptions of the causes and key issues

ertaining to the skin breakdown. The interviewers did notnterfere with the normal routines of the participants, except innusual circumstances (eg, when 1 participant suffered annjury from a fall, the interviewer encouraged him to take care
f the injury). A total of 9 collateral interviews took place over
Arch Phys Med Rehabil Vol 87, November 2006

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1518 MODELS OF PRESSURE ULCER DEVELOPMENT IN SCI, Clark

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he course of the study. Overall, the data-collection effortnvolved more than 390 participant contact hours and morehan 4000 pages of written field notes.

In accordance with a key strategic aspect of qualitativeesearch methodology, the trustworthiness (analogous to “reli-bility” in quantitative research) of the obtained informationas furthered by the application of repeated in-depth probing

nd clarification questioning that occurred during multiple in-erviews.18 At times, information was cross-checked through

edical records, direct observations, or questioning with fam-

Table 1: Basic Characteristics of Study Sample

Variable CategoryFrequency,

n (%)

Sex FemaleMale

6 (30)14 (70)

Age at study (y) 20�2930–3940–4950–5960�

2 (10)5 (25)9 (45)2 (10)2 (10)

Race/ethnicity African AmericanAsian AmericanWhiteHispanic

8 (40)1 (5)6 (30)5 (25)

Education Junior high schoolSome high schoolHigh schoolSome collegeCollege graduateGraduate study

1 (5)4 (20)3 (15)5 (25)6 (30)1 (5)

SES LowMiddleHigh

8 (40)10 (50)2 (10)

Current employment Yes: formalYes: nonstandard or illegalNo

6 (30)3 (15)

11 (55)Age at injury (y) 5�19

20�2930�3940�4950�

5 (25)7 (35)4 (20)3 (15)1 (5)

Years since injury 1�910�1920�2930�

9 (45)4 (20)3 (15)4 (20)

Level of injury ParaplegiaTetraplegia

11 (55)9 (45)

Completeness of injury IncompleteCompleteNot applicable

3 (15)16 (80)1 (5)

Table 2: Summary of Models of Press

Model

1. Balance of liabilities and buffers2. Individualized risk profile: pie chart3. Individualized risk profile: flowchart4. Pressure ulcer event sequence
5. Pressure ulcer event sequence with temporal comprehensiveness

ly members or caregivers. When applied, such cross-checkingevealed acceptable convergence with participants’ statements.

ata Processing and AnalysisAll interviews were tape recorded and transcribed. During

he course of data collection, regular meetings were held inhich the researchers, with access to hard copies of the tran-

cribed interviews, discussed emergent themes25-27 by whicho organize the wealth of information about lifestyle in relationo pressure ulcers. At this time, preliminary individualizedrofiles were developed to help guide data collection, analysis,nd interpretation for each participant. Each profile containednformation about the participant’s personal characteristics,ifestyle, environmental supports and hindrances, health beliefsnd practices, and pressure ulcer history.

After the completion of data collection, a wider workingroup, based on careful review of the original transcripts andreliminary individual profiles, developed intensive individualase profiles consisting of a several-page detailed individualtory along with other products such as story analysis, decisionrees, and personal quotes. In addition, transcribed data werentered onto Atlas.ti,28,a a computer program for qualitativeoding analysis. These coding analyses were undertaken toefine categories noted in the case profiles, help organize theast amount of collected information, and allow for cross-hecking of research conclusions. Approximately 800 totalours of computer-based coding were performed by the re-earch team. Both the intensive profiles and computer dataank were reviewed for the purpose of model building.

RESULTSThe study-sample characteristics on key variables are pre-

ented in table 1. An inspection of the table reveals that theample was highly diverse with respect to demographic andCI-related variables.Table 2 summarizes aspects of the 5 models that will be

resented. In general, later models build on the earlier ones bydding new elements. Within the table, the models are differ-ntiated on the basis of 4 dimensions: individualization (personpecific vs general across individuals), interrelations betweenodeled elements (allowing for interaction of elements), situ-

tional specificity (application to a specific instance in which aressure ulcer occurs), and temporal comprehensiveness (in-lusion of early life history plus subsequent effects of pressurelcers).To better show how these models can be used to analyze the

xperience of a particular individual, examples are providedased on a participant in the study, Robert.Raised in the South by a doting great-grandmother, beforehis injury Robert felt that “living life to one’s fullest”meant partying and women. After being injured in a caraccident and sustaining a cervical spinal cord injury, Rob-ert experienced a period of depression in which he turned

lcer Development in Adults With SCI

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Modeled ElementsSituationalSpecificity

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to drugs and alcohol and considered suicide. However, arenewed sense of spirituality carried him through thesehard times and gave him a sense of purpose. Currently, hespends his days taking computer classes, visiting withfriends, going to medical appointments, and shopping atlocal malls. Over the past few years, Robert has becomevery knowledgeable about pressure ulcer preventionthrough his own personal experience. However, he oftenignores his own rules on how to prevent pressure ulcers inorder to maintain his active lifestyle.

Robert reports having experienced 5 pressure ulcerssince his spinal cord injury, 2 of which were seriousenough to require muscle flap surgery. The first pressureulcer occurred when he was living at home with his familyand did not have a night care attendant. He slept all nightwithout being turned and had to sleep in his stools when he

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ig 1. Observed liabilities anduffers that affect pressure ul-er risk in the sample (N�20)f adults with SCI. NOTE.umbers in parentheses cor-

espond to the frequency ofention in the liability and

uffer summaries of the 20ampled subjects with SCI.bbreviation: ADHD, atten-

ion-deficit hyperactivity dis-rder.

had accidents. Neither he nor his family had been educated

about how to prevent pressure ulcers and did not realizethey were putting Robert’s skin integrity at risk. Thesefactors led to the development of a stage IV pressure ulceron his buttock, at which point his mother drove him toCalifornia to be treated at a well-known rehabilitationcenter. He was admitted to the rehabilitation facility andhad muscle-flap surgery on the pressure ulcer. Robert’snext 2 ulcers developed when he was discharged from therehabilitation facility to a skilled nursing facility, where heresented being “surrounded by old people.” Despite notbeing able to perform pressure reliefs, he started to spenda large amount of time riding around in his wheelchairwith 2 other young men who lived at the facility. Becauseof the long hours of unrelenting pressure, Robert devel-oped pressure ulcers on each of his buttocks. Fortunately,attendants at the skilled nursing facility were able to treat

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of Urgency Concerning Strong Motivation to Avoid Pressure Ulcers (4)

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fourth pressure ulcer occurred because of an unexpectedevent. When flying back to California after visiting hisfamily, Robert’s flight was delayed for over 12 hours,leaving him stranded at the airport. Robert spent over 20hours in his wheelchair that day, and, when he got home,the skin on his backside broke down. It quickly escalatedto a stage IV pressure ulcer, which required surgery.Robert’s final pressure ulcer occurred when his wheelchairbroke down, leaving him unable to perform pressure re-liefs. Rather than staying in bed and giving up his activelife, Robert sat in his broken chair. This led to a pressureulcer, which worsened when he did not follow the doctor’sprescription to stay in bed and out of his chair. When theulcer worsened, Robert realized that a few weeks of bedrest was preferable to months spent in the hospital. Hefinally agreed to stay in bed, and the ulcer healed.

odel 1: Balance of Liabilities and BuffersThe first model reflects the additive contribution of liabilities

nd buffers in defining pressure ulcer risk. As pictured in figure 1,his model highlights the notion that pressure ulcers tend tomerge when the overall balance of liabilities to buffers isxcessive, a clear finding in our study that is consistent withrior research.29,30 Figure 1 lists significant pressure ulceriabilities and buffers that surfaced on multiple occasionsithin the 20 case profiles. Particular items were identified

hrough 1 of 2 routes: (1) previous extraction from the literatureith verification in the case studies and (2) origination from the

ase studies. It should be noted that the items in figure 1 do notomprise an exhaustive list.

Within figure 1, the numbers within parentheses after eachtem correspond to the frequency of mention within the 20iability and buffer summaries. In considering these frequen-ies, it should be remembered that the sample was selectedonrandomly, and, therefore, these results are unlikely to applyo the population of all adults with SCI. The purpose forncluding the frequencies is to document the high degree ofrevalence of many of the risk factors in the sample (eg, poorlanning, as well as family problems, were noted as pressure ulcerisk factors among more than 50% of the study participants).

odel 2: Individualized Risk Profile Pie ChartOne drawback of model 1 is that it fails to incorporate the

elative influence of the various liabilities and buffers in spe-ific lives. The second model builds on model 1 by indicating,hrough use of a pie diagram, the relative strengths of liabilitiesnd buffers as they occur at a given point in time within anndividualized life context. The overall degree of risk is re-ected by the percentage of the area that contains liabilities, aspposed to buffers.Figure 2 presents risk-profile pie charts for 2 study partici-

ants, Robert and Helen. A comparison of the 2 charts revealshe wide divergence in profiles that we typically observed whenomparing different persons. In deriving pie charts for thetudy participants, the study group carefully reviewed the caserofiles, coming to consensus on the amount of weight given tohe various elements. As is evident from reviewing the dia-rams in figure 2, the items are often more detailed or individ-alized than the generalized liabilities and buffers in figure 1.he information contained in pie diagrams facilitates a quickverview of pressure ulcer risk in a person’s life and thusorresponds to a simplified background risk profile that coulde useful in selected clinical applications.In developing pie diagrams, as well as in subsequently

resented individualized models, consideration was given to b


he set of background variables and known risk factors (eg,emographic and injury-related variables such as degree ofompleteness). However, values on these variables in manyases may not directly surface in a given personal risk profileor at least 2 reasons. First, because they sometimes representelatively nonsalient constants that fail to have any directmpact on ongoing risk within the stream of everyday life, thenclusion of numerous such factors would reduce the parsi-ony of the profiles. Second, such variables in many cases are

n fact represented in the model but are subsumed by largerategories (eg, within figure 2 Helen’s employment issues areubsumed within the category of balancing activity and rest).

odel 3: Individualized Risk-Profile Flow ChartA higher level of complexity is captured by model 3, which

dds interactions among elements to an individualized riskrofile. As reflected in figure 3, within this model buffers andiabilities contribute to interconnected systems of multiple in-uences. Such systems achieve a type of ongoing equilibrium

hat requires adjustments when given elements change. As withodel 2, this profile represents the risk-relevant influences that

re present during a given period or slice of time in a person’sife and can change as elements over time are added, dropped,r altered.The flowchart presented in figure 3 depicts Robert’s individ-

alized risk profile during the time he was living at the skilledursing facility, when he developed pressure ulcers on hisuttocks. Robert was dissatisfied with his environment. There-ore, in accordance with his high activity level and penchant foraking risks, he would spend all day riding around the neigh-

ig 2. Individualized risk-profile pie chart (model 2). Buffers andiabilities of 2 research participants: (A) Robert and (B) Helen.

orhood with other young men despite the fact that he was

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nable to perform pressure reliefs independently because ofnadequate equipment (a wheelchair without a tilt feature). Theontinued use of this wheelchair was in part a result of his lackf finances. This example shows how Robert’s risk for aressure ulcer was affected by an interconnected set of ele-ents.

odel 4: Pressure Ulcer Event SequenceModel 4, which is portrayed in figure 4, offers a much more

omprehensive perspective on how pressure ulcers develop. Inhis model, the individualized risk profile, which in models 1hrough 3 was the entire focus, is merely the starting point (seeeft side of fig 4). Given the individualized risk profile, model

introduces a change event that leads to a pressure ulcer–riskpisode that may or may not result in an ulcer. The pressurelcer–risk episode incorporates the wider set of physical, psy-hologic, social, and environmental factors that affect, eitherirectly or indirectly, a skin-contact event, which is the imme-iate physical precursor of the potential ulcer. The physicalnderpinnings of the skin-contact event include factors such as

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ig 3. Individualized risk-profile diagram (model 3): Robert. Legendircled numbers inside the boxes indicate the relative importance o

Fig 4. Overview of generalized pre

ressure, type of support surface, contact time, and skin phys-ology, which have been described elsewhere.1,8,31 If an ulcerevelops, then the patient’s response (eg, seeking medicalreatment, failing to detect the ulcer) feeds back into the riskpisode to affect the ulcer’s subsequent course.

It is important to note that model 4 is applicable to both theevelopment of a new ulcer and the historical course of anylcer that develops. In the latter case, the feedback loop thatnvolves the risk episode, the skin-contact event, the develop-ent of an ulcer, and the response to the ulcer can extend overseveral-month period that includes progression through mul-

iple stages, the results of medical intervention, and otherhenomena that affect the ulcer’s course. If no ulcer occurs asresult of the risk episode, or if an ulcer did develop but thenealed, then the pressure ulcer outcome reverts to “no-ulcer”tatus and the feedback loop stops.

A key emphasis of this model is that pressure ulcer riskesults from the introduction of some element of change intohe person’s daily-life context (ie, the “change event”). Within

GOOD UNDERSTANDING OF CAUSES/PREVENTION OF

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he sample of adults with SCI, change events typically reflectedircumstances (accidental or nonaccidental) pertaining to dailyare, the results of activity choices, or medical conditions andreatments. For example, in Robert’s case, activity-relatedhange events consisted of being unexpectedly stranded at theirport after a flight delay and spending all day in his wheel-hair riding around with his friends from the skilled nursingacility.

As reflected in figure 4, individualized risk profiles play anmportant role in determining the nature, frequency, and sever-ty of change events that unfold in the context of daily life. Forxample, Robert’s proclivity for putting activity before hisealth needs combined with his tendency toward risk takingnfluenced his decision to ride around the neighborhood with-ut performing pressure reliefs.After the change event, the pressure ulcer–risk episode re-

TYPE OF FORCE:DOWNWARD

PRESSURE FROM BODY WEIGHT

POINT OF CONBOTTOM ON SE

WHEELCHA

PRESSURE ULCER

INADEQUATE FINANCES

INAPPROPRIATE EQUIPMENT

LACK OF ADHERENCE TO PREVENTATIVE

RECOMMENDATIONS

INSTITUTIONAL ENVIRONMENT

HIGH ACTIVITY LEV

SOCIAL SUPPORT

HANGING OUT ALL DAY WITH FROM NURSING HOME

NO ATTENDANT PRESENT

UPRIGHT POSTURE

LACK OF ATTENTION TO PRESSURE RISK

NOT ABLE TO P PRESSURE RE

Individual Risk

Profile:Robert

Change Event

PressureUlcer RiskEpisode

Skin Contact

Event

Outcome

ects the holistically intertwined set of influences that directly s


r indirectly affect skin contact over the time course of ulcerisk or ulcer presence. As such, it represents a critical windowuring which an ulcer can initially develop or, if present, canorsen. It is expected that multiple, and sometimes overlap-ing, risk episodes occur in the lives of persons with SCI.Figure 5 shows the theoretical sequence by using as an

xample Robert’s pressure ulcer that resulted from his longheelchair ride. A quick glance at the figure reveals the com-lexity and rich extent of individualization involved in a pres-ure ulcer–event sequence. Although figure 5 portrays a sev-ral-hour sequence that ends with the initial formation of anlcer, in principle, the figure’s temporal sequence could bextended to incorporate feedback loops that reflect the ulcer’subsequent effects on the risk profile or on a more elongatedisk episode. Various features that characterize the majority ofressure ulcer event descriptions provided by members of the

SWEATY MOIST SKIN

SEVERAL HOURS OF CONTINUOUS

CONTACT

IGH TAKING ATTENTION TO BODILY

WARNING SIGNALS

GOOD UNDERSTANDING OF CAUSES/PREVENTION

OF ULCERS

STABLE ATTENDANT CARE

S

CHAIR DOESN’T RECLINE

MALL DAY OUTSIDE NURSING HOME

Fig 5. Analytic example ofpressure ulcer. Shadedboxes represent buffers, un-shaded boxes represent lia-bilities; ¡, facilitates; - · -· ¡, inhibits.

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rofiles, the tendency for individuals with risky profiles toxperience more or riskier change events, and the intertwiningf liabilities and buffers to affect outcomes, in particular riskindows, are exemplified within figure 5.

odel 5: Pressure Ulcer Event Sequence Withemporal ComprehensivenessModel 5, portrayed in figure 6, goes beyond model 4 by

ncorporating relatively distal factors that contribute to thendividualized risk profile. These factors include geneticakeup, past general life history (eg, childhood experiences,

ducational attainment), the effects of the SCI, and one’sresent general life history (eg, satisfaction with one’s currentiving environment, transportation options). These consider-tions affect the individualized risk profile and, in some cases,ay affect each other. Model 5 also incorporates the feedback

ffects that result from having a pressure ulcer. According tohis expanded conceptualization, pressure ulcers affect the pa-ient’s general life history (eg, lying on one’s back duringecovery from surgery) as well as individualized risk profileeg, one’s daily activity patterns). These changes affect subse-uent change events, pressure ulcer risk episodes, and pressurelcer–outcome histories.

DISCUSSIONThis investigation complements prior research in several

espects. First, the results reflect a grounded approach (ie,eveloped from the “ground level” of information derived fromhe present study), as opposed to stemming from a prioriypothesis tests involving previously specified variables. Sec-nd, the use of in-depth qualitative methodology allowed forew understandings of the specific role of previously identifiedariables within individual life contexts, as well as of theanner in which such variables interact in complex ways to

ffect ulcer outcomes. For example, having a history of ulcers,hich in general is a predictor of subsequent ulcers, had a

Genetics

Past General Life History

General Effects of SCI

Present General Life History

Individual Risk

Profile

General Consequences of Pressure Ulcer

Change Event

Fig 6. Long-term pressure ulcer

uffering effect for some people because they became ex- r

remely conscientious about prevention after they experiencedrsthand the consequences of having a serious ulcer. A thirday in which the study complements previous work pertains to

he identification of novel or previously underestimated riskactors such as family problems, reduced vigilance because ofverconfidence, or a strong drive to perform activities at thexpense of needed rest. Such factors, which appear in figure 1,an potentially be included as predictors in future quantitativeesearch studies.

Because of the wealth of factors that affect life at theveryday level, it is not surprising that the results of ournvestigation underscored the notion that multiple, com-lexly interrelated circumstances contribute to the develop-ent of pressure ulcers and their recurrence. The confirma-

ion of this basic expectation suggests that future theoreticalonceptualizations should incorporate, when possible, anwareness of the complex interaction of factors that lead toressure ulcers. In addition to being complex, the daily-ifestyle phenomena that surround pressure ulcers are alsondividualized. This outcome supports the usefulness ofempering statistically generalizable models with recogni-ion of the need to consider the common occurrence ofndividual exceptions.

Our findings have important implications for clinical prac-ice. For example, the widespread individual differences thate observed suggest that occupational therapists, nurses, andther health practitioners can foster successful prevention byelping patients identify and implement lifestyle changes thatre considered to be personally feasible within their uniquelyxperienced set of circumstances. Thus, an optimal interven-ion should not only incorporate standard prevention tech-iques such as skin checks or pressure reliefs but also, based ongiven patient’s personal profile, direct attention to additional

oncerns such as self-advocacy skills in accessing medicalervices, stress management, and the ability to identify anptimal balance between living a full life and avoiding activity-

PressureUlcerRisk

Episode

PhysicalPressure

Point of Contact

SkinSusceptibility

Pressure UlcerOutcome

NoUlcer

Ulcer

Response to Ulcer

sequence with feedback loops.

elated ulcers. To promote prevention on a sustained basis,


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herapists should also help patients identify ways to ensconceecommended prevention measures into their ongoing dailyoutines. This suggestion stems from our study’s findings thatndicate that, commonly, the multifaceted exigencies of dailyife often minimize patents’ ability or motivation to success-ully maintain learned medical recommendations within actualife settings.

In the area of assessment, our results suggest that it woulde ideal to develop flexible instruments that can capturendividually relevant constellations of physical, psycho-ogic, social, and environmental ulcer-risk influences. Suchools might include some open-ended assessment categoriesnd also allow for combinations of items or possible eventshat produce especially high risk. For example, poor knowl-dge of preventive techniques, inadequate attendant care, orhe combination of both could constitute profiled informa-ion for some, but not all, patients. The models presented inhis article could provide a starting point for conceptualizinguch novel approaches.

tudy LimitationsThis study has several limitations. First, because of the

mall, nonrandom sample, it is inappropriate to generalizehe results to the more general population of adults with SCI.econd, it should be noted that the models that were pre-ented are not intended to exhaustively capture all relevantisk factors or describe the origin of every pressure ulcer.nstead, they reflect important themes that tended to resur-ace during the interviewing process. Finally, it is possiblehat some participants may have reported misperceptions.or example, in comparing participants’ statements with

nformation contained in their medical charts, it was foundhat in a minority of cases there was a discrepancy pertain-ng to exactly when a given ulcer occurred. However, we doot believe that this type and degree of discrepancy, whichs common in interview-based research, significantly af-ected the resulting models.

CONCLUSIONSGiven the study findings, future research could profitably

ssess the degree of generality of the identified risk processesnd risk factors by assessing larger or more random samples ofdults with SCI. Also, our study findings suggest a need toevelop new pressure ulcer–risk indices that, by incorporatingttention to individualized information and patterns of suscep-ibility, complement existing risk-assessment tools. Finally, itould be potentially useful to conduct similar qualitative stud-

es on other SCI-related issues such as urinary tract infection orspects of individuals’ experiences during the acute-injuryhase.

Acknowledgments: We thank Marcus Fuhrer, PhD, and Susanarber, MA, OTR, for making a number of helpful suggestions basedn a review of the manuscript. For their critical review of the originaltudy proposal, we would like to acknowledge Rod Adkins, PhD, andathleen Gross, MA, OTR/L. For their work in data collection and

nalysis and interpretation of data, we would like to acknowledge Ernalanche, PhD, OTR/L, Stephanie Mielke, MA, OTR/L, Clarissa New-

on-Saunders, MA, OTR/L, and Mary Kay Wolfe, OTD, OTR/L. Forheir work in analysis and interpretation of data, we would like tocknowledge Paul Bailey, MSc, Elizabeth Crall, MA, OTR/L, Aaronakman, MS, OTR/L, and Faryl Saliman Reingold, MA, OTR/L.

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Data-Based Models of How Pressure Ulcers Develop in Daily-Living Contexts of Adults With Spinal Cord Injury