Abstract
This systematic review helps occupational therapy practitioners better understand the experiences of people living with a pressure injury at home.
Pressure injury (PI) research has had a distinctly biomedical, nursing, and hospital focus, concentrating primarily on prevalence, prevention, or medical intervention (Jackson et al., 2016). Although a recent global study found that 62% of PIs among hospitalized patients were acquired in acute care settings (Li et al., 2020), people are discharged, acquire, and live in the community with PI.
People living with PI are often seen by health professionals working in the community, including occupational therapy practitioners, for PI management. Although clinical guidelines, such as the international Prevention and Treatment of Pressure Ulcers/Injuries: Clinical Practice Guideline (European Pressure Ulcer Advisory Panel et al., 2019) exist, they do not provide specific guidance for home-based care. In fact, there are few relevant guidelines for PI management in home contexts globally and a paucity of research attention (Karadağ & Çakar, 2022).
Occupational therapy practitioners, therefore, have limited evidence to guide and support their intervention with adults living with PI at home. A decade ago, Stinson et al. (2013) reviewed four studies addressing the role of occupational therapy practitioners in PI management. Roles included person-centered approaches to optimizing pressure relief in seating and positioning and education on pressure-relieving maneuvers, minimizing pressure in transfers and activities of daily living (ADLs), and progressing sitting time and physical activity (Stinson et al., 2013). These descriptions of the occupational therapy role do not, however, reflect the full possible scope of occupational therapy practice.
Living with and managing PI at home is complicated by multiple factors, including clinician availability and skills, and it is interwoven with issues unique to each individual’s home and family environment (Irwin, 2023; Singh & Shoqirat, 2021; Soegaard et al., 2023; Taylor et al., 2021). Often, there is a single unqualified family caregiver, or a basically trained paid care worker assisting on a limited schedule, to move the person between surfaces, reposition them (particularly at night), inspect skin, and help with ADLs. Caregivers have reported challenges with repositioning, transfers, and assisting with personal care (Aloweni et al., 2024). Assistive technology to reduce pressure, such as profiling hospital beds, pressure mattresses, and pressure-relieving seating solutions, is frequently abandoned at home (Jackson et al., 2017a) and requires skilled assessment, timely funding, and family education for success.
Given the limited resources and complexities of home environments, changing established routines for PI prevention and care at home is more difficult than in acute care settings (Fogelberg et al., 2009). People living at home with PI are likely to engage in leisure, work, and everyday activities that increase PI risk, including accessing the community for work, medical appointments, leisure, family obligations, and shopping. Fogelberg et al. (2009) highlighted an occupational tension between optimizing pressure care and community participation for people with spinal cord injury (SCI). Community excursions pose additional PI risks, such as shear during car transfers; the vibration and movement associated with traveling in a wheelchair in a van, bus, or train; toilet transfers in unfamiliar public bathrooms; increased skin temperature from heat outdoors; and being unable to relieve pressure or rest. Being active in the community also brings accidental pressure injury risks, such as sitting for longer than planned when transport is delayed (Fogelberg et al., 2009). Access to assistive technology and therapists to skillfully navigate solutions for optimal sleep, seating, transferring, toileting, showering, and positioning is harder to access from home, particularly in rural areas.
Nursing academics recently completed a meta-synthesis (Burston et al., 2023) and a narrative review (Ibeh & Hambridge, 2024) exploring lived experiences of PI for adults and caregivers across hospital care, eldercare, and home-based care. These reviews identified that people living with PI at home experience reduced independence, social isolation, psychological impacts, pain, and loss. They make multiple lifestyle adjustments to meet physical and functional changes and to accommodate service provision (Burston et al., 2023). Burston et al. (2023) identified the importance of addressing psychology and mindset while supporting adaptation to these changes and PI management. Although this research is an important departure from the biomedical focus of current clinical guidelines, these reviews explored patients’ experiences with a nursing lens rather than an occupational lens. Understanding the need to participate in meaningful occupations from the perspective of people living in the community with PI is an important first step to understanding best practice for occupational therapy and providing meaningful individual care for people living with PI. This qualitative systematic review synthesized the experiences of adults living with PI at home using an occupational lens.
Method
Study Design
This qualitative systematic review with thematic synthesis used the Joanna Briggs Institute methodology for systematic reviews of qualitative evidence (Aromataris et al., 2024) and thematic synthesis as described by Thomas and Harden (2008). The review was reported in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA–ScR; Tricco et al., 2018) and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guideline (Tong et al., 2012).
Eligibility Criteria
The review question (“What are the experiences of adults and/or their caregivers [as proxy informants], living at home with PI?”) and inclusion criteria were defined using the population, phenomena of interest, and context framework (Aromataris et al., 2024).
The population consisted of adults ages 18 yr and older living with PI or their family members or caregivers as proxy informants. PIs were defined as localized damage to skin and underlying tissue because of pressure, or pressure in combination with shear, over a bony prominence (European Pressure Ulcer Advisory Panel et al., 2019) and included PIs of any severity (grade or stage), duration, number, and location. The phenomenon of interest was the experience of living with PI. Experience was defined broadly, including but extending beyond experiences related to wound management, to capture experiences related to impacts on everyday occupations and engagement. The context was community living in private residences.
Original research, of any qualitative methodology, was included if it was published in or after 2000, up until November 2024. Mixed-methods studies were included if qualitative findings could be extracted.
Exclusion Criteria
Studies detailing experiences of adults with PI in hospitals or nursing homes were excluded; however, studies focused on experiences of adults living with PI at home but interviewed about these experiences during hospital stays were included. Articles exploring experiences of children with PI or written in languages other than English were excluded, along with conference abstracts without full-text papers.
Information Sources and Search Strategy
The search was developed in collaboration with an experienced health science librarian. An initial search was conducted in CINAHL Ultimate (EBSCO) using free-text and index terms combined with Boolean operators for keywords describing the population, phenomenon of interest, and context, such as pressure injury, pressure ulcers/sores, decubitus; life experiences, social participation, quality of life; and community living, care at home, home, domestic, and community. The initial search in CINAHL was modified and finalized after the trial (see Table A.1 in the Supplemental Material, available online with this article at https://research.aota.org/ajot) and adapted for ProQuest Central (OVID), Scopus (Elsevier), Cochrane Reviews, and MEDLINE and Embase (OVID) databases. The initial database search was conducted in December 2023 and updated on November 11, 2024. The search was supplemented by citation searching the reference lists of all included records.
Study Selection
Search results were exported to Endnote and uploaded into Covidence, where duplicates were removed. Both authors independently screened articles by title and abstract and by full-text review. Any disagreements were resolved by discussion until consensus was reached.
Study Appraisal
Both authors assessed methodological quality independently using the qualitative methodology checklist from the Critical Appraisal Skills Program (CASP; 2018). Any disagreements were resolved by discussion. Although three studies received a score of “unclear” because of inadequate reporting of three CASP criteria, all studies were methodologically sound and offered valuable qualitative insights into an aspect of the experience of living with PI and were analyzed with equal weighting. Therefore, all records that met the eligibility criteria were included regardless of methodological quality.
Data Extraction
A data extraction template was developed in Excel by Michelle Kersten and piloted by Kristy Coxon. After piloting, the template was refined and included year, country, research objective, design, study context, participant characteristics (comorbidities, wound location, wound severity), key findings related to experiences, and limitations. Kersten independently extracted data from the included studies, and these data were cross-checked and verified independently by Coxon. Relevant text in the “Results” section of each included record were extracted into Excel and uploaded into NVivo 12 for thematic synthesis.
Synthesis of Findings
Experiences were synthesized using the three stages described by Thomas and Harden (2008). The analysis was iterative and involved (1) line-by-line coding of meaning and experience, (2) creation of descriptive themes closely representing the original results, and (3) generation of analytical themes by applying an occupational lens across studies to provide new understandings of the experience of living with PI. Examples from the included articles were selected for illustration and rigor, and the frequency of themes across studies was recorded. Kersten developed the initial codes (Stage 1), and both authors worked collaboratively to code and refine themes (Stage 2) using the constant comparative approach (Levitt, 2018) and applying an occupational lens to analytical themes (Stage 3).
Results
The database searches yielded 2,244 records, including 1,631 unique records (Figure 1). Title and abstract screening excluded 1,577 records, leaving 54 for full-text review. Of these, 41 were excluded, leaving 13 records that met the eligibility criteria. One record was identified by citation searching and included after screening, resulting in 14 included records. With only 14 studies, understanding the experiences of adults living with PI in their own home is in its infancy.
Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) flowchart.
Characteristics and key findings of included studies are presented in Table A.2 in the Supplemental Material. The results of the critical appraisal of each included study are presented in Table A.3.
Characteristics of Included Studies
Studies were conducted in the United Kingdom (n = 6), United States (n = 4), Europe (n = 3), and Australia (n = 1). Most studies used open-response methodologies to examine the perspectives of adults living at home with PI, including interviews (n = 6), ethnography (n = 3), and mixed methods (n = 5). Most studies were authored by nursing researchers (n = 11), with a paucity of research arising from multidisciplinary teams (n = 3). Several studies focused specifically on people with SCI (n = 3), older people (n = 2), or people with long-term disability (n = 2); however, most studies did not clearly state coexisting conditions.
Since 2000, few research studies exploring the experience of adults living at home with PI have been conducted. Four primary research programs have emerged, examining different aspects of single datasets via multiple publications: (1) a U.S. ethnographic study of adults with severe PI and SCI, led by occupational therapy practitioners (Fogelberg et al., 2009, 2016; Jackson et al., 2010); (2) a U.K. qualitative study of a mixed caseload of patients attending tissue viability services, led by nurses (Gorecki et al., 2010, 2012); (3) a U.K. mixed- methods study of community patients, led by nursing researchers (Jackson et al., 2017a, 2017b, 2018); and (4) a Spanish study of older home nursing patients and their caregivers, led by nurses (García-Sánchez et al., 2019a, 2019b). Two included articles were pilot studies with small sample sizes. Overall, there were only seven unique datasets with a total of 223 participants, including interviews with participants with PI (n = 100) or caregivers (n = 20) and medical records review (n = 103).
Thematic Synthesis
Six overarching themes arose from the thematic synthesis (Figure 2). The first three themes described daily experiences of living with PI: (1) living with occupational deprivation, (2) living with pain, sleep deprivation, and smell, and (3) living with fear, anxiety and uncertainty. The fourth theme described transformative journeys through grief and loss to learn how to live with PI and associated risks: finding ways to cope with grief for the loss of life, autonomy, body, and function. The final two themes described learning experiences necessary to live with a PI: learning health self-efficacy and occupational balance and sharing the PI journey with health professionals. All themes and subthemes are presented in Table A.4, which tabulates the evidence across included studies, organized according to study population context, analytical themes, and subthemes. Italics have been used to denote subthemes.
Themes exploring the experience of living with PI in the community.
Living With Occupational Deprivation
Living with occupational deprivation was common for adults with PI: “That’s what gets to me more than anything. I can’t do, can’t do sod all” (Hopkins et al., 2006, p. 340). An apt description of the occupational limitations of adults with PI was that factors outside a person’s immediate control restricted their engagement in meaningful occupations (Whiteford, 2000). This theme had four subthemes.
PI reduced occupational role fulfillment and meaningful participation. Activity limitations resulting from PI were echoed by participants across studies, such as “It’s been a hell of a thing. Y’know, sittin’ in a room all the time, it’s a pain in the ass. Not gettin’ to go out, go fishin’ or nothin’” (Langemo et al., 2000, p. 229). Missing out on important relationship activities and family events negatively affected fulfillment of family roles, such as parenting or partner intimacy. Restriction of productive and social roles affected connectedness and mental health: “I love working and being with people. I am a people person—don’t keep me so isolated or I would die” (Langemo et al., 2000, p. 229).
Participants grieved, feeling robbed of life. PI interrupted their meaning and purpose, leaving them feeling helpless, burdensome, and out of control. The PI controlled their life: “The one thing about it is the pressure sore is in control and I am not” (Jackson et al., 2018, p. 412). Strong feelings of injustice emerged: “Why the hell has this happened … it’s not fair … on top of everything else” (Gorecki et al., 2010, p. 1530).
Activity limitations were exacerbated by bedrest prescribed for healing. Extended bedrest is a very difficult undertaking. Adults with severe PI, particularly over sitting surfaces, were asked to maintain periods of bedrest for weeks or months, robbing them of occupational opportunities and limiting occupations, including toileting or showering. PI requiring bedrest was most dreaded: “The worse place you can have them [pressure ulcers] is on your butt” (Jackson et al., 2010, p. 571). Bedrest also affected weight, mood, finances, and caregiver burden. For some, bedrest resulted in additional PIs as efforts were made to engage in occupations. For example, Mitch (Jackson et al., 2010) acquired a new PI on his elbow, resulting from extended bedrest lying in prone and using his elbow to prop himself up to engage in activities.
Occupational deprivation leads to social isolation. Most missed attending out-of-home events, leading to social isolation. One participant had not left his home for 8 mo: “I haven’t been out at all, not since last November” (Jackson et al., 2018, p. 412). Judy, however, refused bedrest; sitting in her wheelchair to engage in occupations, despite warnings of surgery: I cannot see me lying around. I mean, it’s just not in my vocabulary. I’m a workaholic. I love my job … I’ve been there [more than 30 yr] and the thought of being gone and not being productive when I’m gone for 3 to 4 mo just did not please me. (Jackson et al., 2010, p. 574)
Living With Pain, Smell, and Sleep Deprivation
Living with pain, smell, and sleep disruption were common experiences for adults with PI. This theme had three subthemes.
Unending pain was a central and distressing experience for participants with intact sensation: “As if you are lacking flesh, as if someone has taken a bite out of you and you are missing a bit and when they touch you to care for the sore you are in agony” (García-Sánchez et al., 2019b, p. 595). Pain resulted in reluctance to participate in everyday activities or even move, described by Maria: “I don’t dare move because everything then gets worse. I lie very still” (Hopkins et al., 2006, p. 348). In contrast, participants with SCI lacked pain signals to motivate or remind them to relieve pressure, leading to nonadherence with pressure reduction measures, especially because such measures reduced sitting time, disrupting occupation.
The wound and exudate is embarrassingly smelly, affecting intimacy, relationships, and occupational engagement: “Basically, I won’t go out and I don’t want to go out with, you know … just the smell, because of the smell. If the smell wasn’t there, it wouldn’t have bothered me whatsoever. I’d just go out” (Jackson et al., 2018, p. 412). Decisions to isolate oneself because of smell further increased social isolation.
Sleep is disrupted by pain, positioning, and equipment. Equipment is often experienced as uncomfortable and mismatched to functional needs at home: I’ve got a hospital bed that I don’t like. When I lay on it … you can hear the squeaking [of the air]. … I keep hearing that all the time. … I don’t like the bed anyway. I wish to God I had my own bed or a different type of mattress. (Jackson et al., 2018, p. 412)
Living With Fear, Anxiety, and Uncertainty
The psychological impact of PI was experienced as living with fear, anxiety and uncertainty. This theme had two subthemes.
PI resulted in constant anxiety about the cause, healing, or reccurrence. Participants worried about the PI and its impact on their immediate and long-term health: “You think is it necrotic. What’s gone wrong, will I have to go into hospital?” (Fox, 2002, p. 15). Fear could be all consuming: The one thing that’s consuming me at the moment is the pressure sore. Everything else fades into insignificance, the fact that your heart might stop at any moment doesn’t worry me as much as the pressure sore. It’s consumed me in the last two to three weeks. (Jackson et al., 2017b, p. 3065)
Living with PI meant living in a state of constant vigilance and danger: “I think it [danger of recurrence] will be there, very risky. … It worries me that you know it might happen” (Jackson et al., 2017a, p. 385). The feeling of being in constant danger was most pronounced in ethnographic studies with people with SCI (Fogelberg et al., 2009, 2016; Jackson et al., 2010). In-depth examination of participants’ lives provided insight into extremely dangerous life events leading to serious PI requiring surgery and months of bedrest, such as entering prison, changing caregivers, or becoming homeless. For example, a participant traveling to see family experienced flight delays: “I stayed in one airport for twelve hours, and I slept maybe six or seven hours in one position [in the wheelchair] and that’s not good, by me missing those two flights that was it [causing a serious PI]” (Jackson et al., 2010, p. 50).
Finding Ways to Cope With Grief and Loss
Participants experienced transformative journeys through grief and loss to find new ways to cope with occupational deprivation, pain, sleeplessness, and anxiety associated with PI. Such journeys were described in all four major research programs across different clinical populations. This theme had two subthemes.
Participants learned ways to cope with changed body image and sense of self: “There were days when I felt a bit like a eunuch, the femininity side had gone and then I’d get the make-up out and bring it all back” (Fox, 2002, p. 15). Sense of self was also affected, highlighted by an older participant who came to terms with it: “I used to be very active, strong as a bull. Now, I’ve got to be honest with you, I’m virtually disabled [because of PI]. I make no bones about it” (Jackson et al., 2018, p. 411).
New coping strategies of thinking positively were established to manage grief and loss. Participants drew on spiritual or religious beliefs to cope and make meaning of their situation. Spiritual ways of coping were described by several participants with very serious PIs, with one participant drawing comfort from a Catholic nun visiting him: “Everyone tried to get me to talk, but I wouldn’t until Sister B came to see me. … She brought me a dream catcher” (Langemo et al., 2000, p. 231). Another stated that the process of writing a book “was what healed me! Maybe [the] difference I have been able to make in a few lives is why I was put in this wheelchair” (Langemo et al., 2000, p. 231).
Learning Health Self-Efficacy and Occupational Balance
The transformative journey back to health after PI was characterized by learning to prioritize self-care. This involved three subthemes related to learning.
Individual and caregiver learning about PI risks was imperative for healing. Participants needed to learn, in detail, about their unique PI risks, develop good pressure relief habits, and understand how lifestyle choices and pressure-relieving equipment interacted. For example, a participant with SCI was desperate to finish his studies but was sitting too long, with a cushion he incorrectly adapted. He reflected, “I was in the school, during [the] semester, and I [thought] ‘keep on, keep on, keep on’ going. … I just wanted to finish the semester then. Then it [the ulcer] was all the way to the bone” (Fogelberg et al., 2016, p. 471).
Adults with PI must learn self-efficacy skills. Health self-efficacy skills included understanding how to manage the PI and advocate for (even demand) care from health services. For example, a participant with SCI had difficulties getting a cushion quickly: It was because those cushions I busted, and I was sitting on those foam cushions … when my gel one busted I caught a sore. Yeah that’s a problem that needs to be corrected. You need to let them know. Medicare needs to let us have them right away. (Jackson et al., 2010, p. 475)
The need for health self-efficacy skills extended beyond just communicating with health services. For example, Fogelberg et al. (2009) described participants with SCI making relationship or lifestyle choices that led to becoming homeless or going to jail, resulting in serious PI.
Participants needed to constantly negotiate occupational balance. Finding a balance with acceptable PI risk that allowed participants to fulfill work and family responsibilities and live a meaningful life was difficult: “You know you shouldn’t but you do it [going out instead of bedrest] anyway” (Gorecki et al., 2010, p. 1531). Finding occupational balance required measured consideration of ultimate activity restrictions: “We have to consider carefully what we’re doing and where we’re going. We can’t get out into the hills or woods or anything like that” (Jackson et al., 2018, p. 412).
Sharing the Journey With Health Professionals
Sharing the journey with health professionals was inevitable, with positive and negative implications depending on the experience. This theme had four subthemes. Timely access to health professionals was important, especially at times of heightened PI risk (Jackson et al., 2017a) and with SCI (Jackson et al., 2010). Treatment takes time from life; waiting for treatment and home visits took time from already restricted lives: “Although the nurses are very good and try and come at a certain time, the whole of my morning is completely disrupted until they are gone, then I have the rest of the day to myself” (Hopkins et al., 2006, p. 349).
Participants feared wound worsening with poor continuity of care or skill, especially when transitioning between community and hospital or different health professionals: “That’s the problem I have that the tissue viability nurse, who is the expert doing a wonderful job—you get home and the district nurse does something entirely different” (Jackson et al., 2017a, p. 385).
Trust and shared decision-making among individuals, caregivers, and health professionals was fundamental to psychological well-being. A participant reflected, “She was one you could really talk to and you sort of knew you could rely on what she said” (Kapp & Annells, 2010, p. S11).
Discussion
This review synthesized the psychosocial and transformative experiences of living with PI at home. Articles described PI as life defining and as causing occupational deprivation, pain, smell, and sleep deprivation, with subsequent fear, anxiety, and uncertainty. Adults with PI established new ways of coping with grief and loss as they learned health self-efficacy and occupational balance with shared decision-making with health care professionals. These findings are consistent with those of recent meta-analyses (Burston et al., 2023) and narrative reviews of people’s lived experiences of PI in hospital, institutional, and community care contexts that identify the importance of social connection, emotional support, and supporting behavior change (Heywood-Everett et al., 2023; Ibeh & Hambridge, 2024). Occupational therapy practitioners are well placed to address the occupational and psychosocial needs of adults with PI identified in this review by addressing key issues within their scope of practice. These include addressing occupational deprivation, supporting occupational balance and self-efficacy, advocating for collaborative person-centered care from the health professional team, and advocating for holistic clinical guidelines that are inclusive of people living with PI at home.
Addressing Occupational Deprivation
Our first key finding relates to the experience of occupational disruption and deprivation and its profound impact on the lives of adults living at home with PI. Experiencing restricted participation in meaningful activities led to grief and loss. Adults on bedrest at home reported the most severe occupational disruption. The scale of disruption, particularly when imposed by health professionals rather than through shared decision-making, arguably leads to occupational deprivation. Despite frequent prescription of bedrest, limited evidence supports its efficacy. A Cochrane review from 2016 found no relevant studies reporting any impact of bedrest on healing of PIs for wheelchair users, in any setting (Moore et al., 2016). Furthermore, the international clinical practice guideline for pressure injuries published in 2019 (European Pressure Ulcer Advisory Panel et al., 2019) recommends that professionals evaluate the benefit of bedrest for wound healing against the risk of new PIs, physical and emotional health, and lifestyle restrictions. However, pragmatically, particularly for wheelchair users with PIs on ischial tuberosities or sacral areas, bedrest may be the only immediate solution to reducing pressure over sitting surfaces. Offloading pressure adequately to support continuation of seated occupations, even for shortened periods, to reduce occupational disruption, requires specialist precision, including changes to seating dynamics, cushions, and repositioning habits (Stephens & Bartley, 2018). This is very challenging to achieve quickly in the home because it requires specialist seating management, such as assessment, access to positioning equipment and cushions, and education on behavior changes for individuals and their families (Irwin, 2023).
Meeting care needs at home is complex, and optimal PI care is often affected for people with complex social needs (Clark et al., 2014; Sleight et al., 2019); in challenging environments, such as homes with clutter, uncleanliness, or inaccessibility; or experiencing housing insecurity (Heywood-Everett et al., 2023). Changing home routines to accommodate shorter time sitting out of bed may incur additional paid caregiver hours and visits to transfer back into bed because of reduced sitting tolerance. A single family caregiver may not be able to achieve the precise positioning needed to offload pressure. The clinical expertise, home care service, and equipment necessary to reduce pressure on the PI, particularly for seated occupations, may be difficult to resource quickly in the community, and more so in rural or resource-constrained regions, contributing to longer periods of occupational disruption and deprivation.
To support health and quality of life for adults restricted to bed, home, or certain activities, occupational therapy practitioners should consider all strategies used to support occupational enrichment in other populations. A recent Japanese study (Uemura et al., 2023) looked at occupational disruption for 240 healthy older people isolated at home during the coronavirus disease 2019 pandemic (which was less restrictive than bedrest or activity limitation for PI). The study indicated that 25% of usual activities were restricted during home isolation, especially physically demanding leisure and social activities. Increased engagement in activity, including finding new activities to compensate for home restriction, correlated with better health and quality of life (Uemura et al., 2023). Occupational therapy practitioners are skilled in promoting occupational engagement and should facilitate alternatives for people restricted by PI. This may be most critical for those on bedrest.
A recent exploratory study of practices to decrease the occupational deprivation of people in Australia punished with solitary confinement, in which individuals are confined to a single room (which is still less restrictive then bedrest for PI), included interventions such as orientation (clock, orientation board), sensory modulation (music, scents, smells, tastes), lighting, reading, creating inspiring images, mindfulness, physical activities, pen-and-paper activities, games (jigsaw puzzles, Scrabble), and arts and crafts (making collages, origami, card making, drawing). Overall, the focus of interventions in forensic care was on understanding the person’s motivations and what provided meaning and then building daily routines and providing structure and choices using recovery principles of hope, control, and opportunity (Mynard et al., 2024). These approaches may provide a starting point for decreasing occupational disruption and deprivation, therefore better supporting the psychosocial health of individuals living with PI at home, especially those who are asked to undertake a period of bedrest or activity restriction.
Addressing Occupational Balance and Health Self-Efficacy
Finding occupational balance between engagement in meaningful activities and managing skin health is key for adults with PI at home. Our findings suggest that learning occupational balance involves not only education about PI risks and skin health but also empowering people to make decisions about balancing occupations. On multidisciplinary teams, occupational practitioners, with their person-centered approach, are uniquely situated to help individuals with planning and prioritizing activities and to support learning about personal PI risks in an unpredictable home and community environment.
Occupational tension was especially heightened for people with SCI (Fogelberg et al., 2009; 2016; Jackson et al., 2010), who, because of decreased sensation, may not experience the pain signals that naturally limit the activities of people without SCI. However, common risks persist for all people with PI, including finding competent caregivers, having health behaviors derailed by mental illness or alcohol use, busy times at work or study, travel delays leading to prolonged sitting in the wheelchair, suddenly becoming homeless, or going to jail. Adults with PI need to navigate such complexities to obtain and sustain a delicate occupational balance, underpinned by strong health self-efficacy skills and an understanding of PI risk factors and their own body.
An important finding was the significance of learning to self-advocate and take ownership of one’s health care to PI recovery. This significance was reflected in themes of learning health self-efficacy and occupational balance and sharing the PI journey with health professionals, which involved people with PI learning about their own unique risk profile in different life situations; how to make occupational balance decisions that balance skin health with living life; how to demand what they need in, for example, an emergency or high-pressure situation; and how to navigate health care systems and partner with health professionals to get the information, services, and assistive technology that they need in a timely way. Occupational therapy practitioners can play an important role in health literacy and coaching adults with PI to help them achieve occupational balance, communicate with health professionals and services, and develop self-advocacy skills.
Health Professional Support
A trusting, collaborative relationship with health professionals who communicate well and who are highly competent in pressure management is fundamental to the psychosocial well-being of people with PI. Learning to live at home with PI and manage long-term, complex PI risks requires individuals and families to partner with health professionals to influence behavior change and empower them to take ownership of the long-term management of their PI. This finding is consistent with a recent systematic review of psychosocial factors related to managing PI in community settings in which self-management is essential (Heywood-Everett et al., 2023) and a qualitative study identifying the importance of self-efficacy (Taylor et al., 2021). However, health professionals can lack skills in navigating sensitive issues, can have paternalistic views of patient compliance, and may need to enact organizational processes in the home that affect rapport building (Heywood-Everett et al., 2023). They can have difficulty initiating conversations with patients about risk and behavior change (Taylor et al., 2021) that extend to person-centered, collaborative decision-making about PI equipment used at home. Several articles included in this review identified high rates of equipment abandonment (Jackson et al., 2017a) or issues with sleep disruption caused by beds and mattresses. It is unclear from the included studies how the process of assessment unfolded. For example, in the United Kingdom, challenges of PI care at home involve service models in which pressure-relieving mattresses and cushions are decided on according to PI risk criteria, without home assessment, client training, or follow-up (Irwin, 2023). Little research has addressed PI equipment needs at home, but determining the most appropriate equipment is a complex, collaborative process. For example, decisions regarding beds and mattresses involve consideration of transfers, bed mobility, space available, pump noise, room temperature, whether the patient sleeps with a partner, and caregiver safety. Occupational therapy practitioners are uniquely qualified to support the psychosocial well-being of people living at home with PI, with collaborative person-centered interventions focused on the key participant experiences synthesized in this systematic review, including occupational engagement, occupational balance, self-efficacy, education about PI risk, tailored equipment provision, and behavior change.
Developing Clinical Guidelines
The critical importance of the psychosocial dimensions of PI identified in this review suggests a mismatch between the support needed by people living at home and the current clinical practice guideline. The current guideline drew evidence primarily from research in acute or institutional care, contributing to a substantial focus on biomedical aspects. International clinical guidelines (European Pressure Ulcer Advisory Panel et al., 2019) provide extensive recommendations for risk assessment, assistive technology, PI assessment, wound dressing, pain management, and PI surgery. However, supporting people living with PI at home is only broadly addressed, with few, low-rated recommendations for measuring quality of life, supporting the development of self-care (including broad self-efficacy skills), education, and psychosocial support. Much of the clinical guidance available does not reflect occupational therapy practitioners’ potential to support individuals living with PI at home. Internationally, documented occupational therapy roles are primarily biomedical, including assistive technology, positioning, skin health education, and seating protocols, using a person-centered approach and knowledge of occupation (Stinson et al., 2013). There is scope for broader occupational therapy practice to support occupational engagement, self-efficacy, and well-being, which requires targeted research and advocacy for inclusion in future multidisciplinary international guidelines.
Limitations
Including only published articles written in English and excluding gray literature were limitations of this review. The included studies did not report the bony prominence underlying the PI and the background of comorbid conditions, such as whether they were related to age, SCI, or another long-term disability, which limits contextual understanding of the relationship among wound location, potential underlying causes of PI, and impacts on occupational engagement. Wound location and underlying causes of PI likely affect individuals’ experiences of mobility restriction, activity limitations, and community participation. An additional limitation of the corpus of evidence to date is the exclusion of people living with PI who have cognitive disability, dementia, or palliative illness. Therefore, their experiences, even if told through their caregiver, are unknown.
Implications for Occupational Therapy Practice
This review has the following implications for occupational therapy practice: ▪ Occupational deprivation has a profound impact on the psychosocial well-being of adults with PI at home. ▪ Positioning, pressure-relieving equipment, and routines should be optimized to minimize occupational deprivation and find alternative ways of engaging in meaningful activities when bedrest or activity restriction is necessary. ▪ Occupational therapy practitioners can partner with adults with PI to teach them the principles of occupational balance and health self-efficacy. ▪ Occupational therapy practitioners should advocate for care that is inclusive of psychosocial support, by multidisciplinary teams, with additional support, communication, and attention during the transition between hospital and home.
Future Research Directions for Occupational Therapy
To inform occupational therapy interventions and broader advocacy, greater understanding of the PI experiences of adults living at home is needed, inclusive of the wide range of people who experience PI, such as people with cognitive and communication support needs, children, people with palliative illness, and rural residents. Future research should incorporate detailed participant characteristics to explore specific occupational therapy management of PI, including ▪ positioning and occupational enrichment interventions that minimize occupational disruption, particularly occupational deprivation during bedrest; ▪ intervention programs promoting lifelong PI risk management, occupational balance, and health self-efficacy; and ▪ development of clinical guidelines for multidisciplinary care at home, including psychological care, and specifically occupational therapy practice guidelines.
Conclusion
This review synthesizes the experiences of adults living with PI at home. The review’s critical finding is that the experience of living with a serious PI at home is psychosocial and transformative. The review synthesized three key experiences: First, PIs are life defining and cause occupational deprivation; adults with PI experience pain, smell, and sleep deprivation, along with fear, anxiety, and uncertainty. Second, adults with PI experience transformational journeys to discover new ways of coping with grief and loss. Third, learning to live well with PI at home involves developing health self-efficacy, occupational balance, and sharing decision-making with trusted health care professionals. Occupational therapy practitioners are uniquely placed to intervene by limiting occupational deprivation, teaching self-efficacy and occupational balance, and leading collaborative multidisciplinary care to enhance psychological well-being.
Supplemental Material
Supplementary material for Experiences of Community-Living Adults With Pressure Injuries: A Qualitative Systematic Review With Thematic Synthesis
Supplementary material, sj-pdf-1-aot-10.5014_ajot.2025.051173.pdf for Experiences of Community-Living Adults With Pressure Injuries: A Qualitative Systematic Review With Thematic Synthesis by Michelle Kersten and Kristy Coxon in The American Journal of Occupational Therapy
Footnotes
*
Indicates studies included in the systematic review.
Acknowledgments
We sincerely thank the specialist librarians at Western Sydney University Library and Anna Markowski, who contributed to the literature search. The authors declare no conflicts of interest or funding sources for this study.
References
Supplementary Material
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