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A narrative review of patients' lived experience of having a pressure injury

22 February 2024
Volume 33 · Issue 4

Abstract

Aim:

To explore patients' experiences of living with pressure injuries.

Design:

A qualitative narrative review and thematic synthesis of qualitative research studies.

Data sources:

Six electronic databases were searched: Medline, CINAHL, Scopus, Web of Science, Embase, and Google Scholar (for grey literature). The search was conducted between October 2022 and April 2023. Setting: Acute, community and care home settings across the UK, France, Belgium and the US.

Review methods:

The PRISMA checklist for reporting systematic reviews was used. The included studies were evaluated for quality using the CASP tool. The Joanna Briggs Institute data extraction tool was used to extract data from the included studies. Thematic synthesis was used to identify themes to present a coherent and nuanced understanding of patients' experiences of living with pressure injuries.

Results:

Nine studies involving 244 participants, aged 21 to 101, with pressure injuries, met the inclusion criteria. Three key themes emerged using thematic analysis: physiological, emotional and psychological, and social effects. Within these themes, subthemes such as endless pain and discomfort, loss of mobility and independence, and social isolation were dominant in all aspects of the lives of patients living with pressure injuries.

Conclusions:

This narrative review gives clear and multifaceted insight into the impact of pressure injuries on individuals' lives, emphasising the necessity for patient-centred care and the integration of evidence-based tools for effective pain management and risk assessment. The impact of pain on emotional and psychological wellbeing was significant, and the financial implications are scarcely known. Future research is needed to explore the experiences of younger adults and the financial consequences of living with pressure injuries.

Pressure injuries are injuries to the skin or underlying tissues that occur over a bony prominence. They are caused by intrinsic factors (such as ageing and immobility) and extrinsic factors (such as pressure and shear) (National Pressure Injury Advisory Panel, 2016). Globally, pressure injuries are a leading cause of preventable patient harm, resulting in a significant increase in morbidity and mortality rates (Sardo et al, 2023). Evidence suggests that pressure injuries predominantly affect the ageing population due to frailty and increased risk of immobility (Awad and Hewi, 2020).

Pressure injuries are a significant health issue due to the economic impact (treatment and litigation costs, for example) and health burden on the healthcare sector and the individual (severe injuries can lead to sepsis, for example) (Hajhosseini et al, 2020). Despite various prevention strategies implemented worldwide to reduce the incidence and prevalence of pressure injuries, recent evidence indicates a substantial rise in pressure injury cases (Triantafyllou et al, 2021). In the UK, it is estimated that 700 000 people develop pressure injuries yearly at the cost to the NHS of £1.4 to £2.1 billion, which accounts for 4% of the total expenditure (NHS England, 2018). Similarly, in the US, about 2.5 million people are affected by pressure injuries, costing $11.6 billion annually (Geng et al, 2023).

These estimates do not reflect the individual burden characterised by negative psychological, emotional, physiological and social impacts (Roussou et al, 2023). A systematic review by Heywood-Everett et al (2023), on the psychological impact of pressure injuries, found that pressure injuries affect the physical, emotional, psychological and social domains of life. Additionally, supporting evidence by Dube et al (2022) indicated that both hospital and community-based patients face challenges related to pain, mobility and social participation. These challenges could negatively affect patients' autonomy, resulting in low self-esteem, anxiety, or depression (Afridi and Rathore, 2020). Therefore, the National Institute for Health and Care Excellence (NICE) (2014) guidelines recommend a holistic approach in treating and managing pressure injuries. Hence, the authors considered that a narrative review of patients' lived experiences with pressure injuries could improve interventional approaches and care strategies for inpatient and community-based patients when applied in line with NICE guidelines.

Background

A person's lived experience of pressure injuries is a complex phenomenon that refers to an individual's personal and subjective experience (Prosek and Gibson, 2021). According to NHS England (2023), the ‘lived experience’ encompasses personal knowledge of individuals living with chronic conditions and the impact on them and/or their carers. Roussou et al (2023) stated that investigating an individual's lived experience provides valuable insight into the severity of their pain, discomfort, and the profound impact on their quality of life. Despite a lack of clear consensus on the term ‘lived experience’ (Rittenbach et al, 2019), exploring the perceptions of individuals living with pressure injuries is imperative to gain a deeper understanding of their experience.

Prevalence data, surveys and reviews have primarily focused on the incidence, risk factors, treatments and risk assessment of pressure injuries (Anthony et al, 2019; Kandi et al, 2022; Geng et al, 2023). In recent years, qualitative research methodologies have aided a more comprehensive understanding of nurses' and carers' experiences when caring for patients with pressure injuries (Rafiei et al, 2021; Heerschap and Woo, 2022). However, there is a paucity of ‘patient-led’ research on patient experiences living with pressure injuries (Burston et al, 2023). Investigating patient experiences will assist health professionals and policymakers in adopting new approaches to pressure injury management (Ledger et al, 2020). Thus, this narrative review will provide a unique insight into patients' lived experiences with pressure injuries. This will aid health professionals in providing comprehensive wound care, psychological support, social interventions, and financial guidance to mitigate the adverse effects on patients' wellbeing.

Aim

This narrative review aimed to synthesise and analyse qualitative studies on patients' experiences of living with pressure injuries.

Method

A qualitative narrative review with thematic analysis was conducted using an inductive approach to gain unbiased and deep insights into patients' lived experiences. This approach is seen as effective in eliciting patients' holistic views (Braun and Clarke, 2023).

The research question was structured using the SPIDER tool (Sample, Phenomenon of Interest, Design, Evaluation, and Research type) (Cooke et al, 2012). The search terms, Boolean operators, and truncation symbols used are detailed in Table 1.


Table 1. Search terms using the Sample, Phenomenon of Interest, Design, Evaluation, and Research type (SPIDER) tool
Sample Patients/service users/individuals ‘Patient’ OR ‘service user*’ OR ‘individual*’ OR (MH ‘patient’)
Phenomenon of Interest Lived experience with pressure injuries/pressure sores/pressure ulcers in both hospital and community settings ‘Pressure sore*’ AND ‘pressure ulcer*’ AND ‘decubitus ulcer*’ AND ‘bedsore*’ OR (MH ‘pressure injury’)
Design Qualitative methodologies Phenomenology* OR grounded theory* OR observation* OR qualitative*
Evaluation Experiences, stories, perceptions and views of individuals living with pressure injuries ‘Experiences*’ OR ‘stories*’ OR ‘perceptions*’ OR ‘lived experience*’ OR ‘feelings*’ OR ‘views*’ OR ‘attitudes*’ OR (MH ‘perspective’)
Research type Original qualitative research Qualitative

Key: MH=major heading;

* =indicates truncation was used

In October 2022, six electronic databases were searched: CINAHL, Web of Science, Medline, Embase, Scopus and Google Scholar. No restrictions on the countries included were imposed. The inclusion and exclusion criteria are shown in Table 2.


Table 2. Inclusion and exclusion criteria
Inclusion criteria Exclusion criteria Databases searched
Primary research of qualitative studies or mixed-methods studiesPeer-reviewed articles published in English from 2000Semi-structured and unstructured interview methods of qualitative research with the highest quality evidenceStudies reporting experiences of adults aged 18 and older living with pressure injuries with and without spinal cord injuryStudies from varied settings eg community, care homes, hospitals, and rehabilitation centresEmpirical research data from any country Quantitative or meta-analysis research papersStudies conducted before 2000Unpublished articlesCarers or nurses' experiences of pressure injuriesChronic wounds or leg ulcers CINAHLMedlineEmbaseScopusWeb of ScienceGoogle Scholar

Search outcomes

An initial advanced search from 2003 to 2022 was undertaken across all six databases, yielding 3570 studies. Duplicate removal and screening based on title, abstract, inclusion and exclusion criteria led to the removal of 3501 papers, yielding 69 articles. A full-text search led to the further removal of five articles that could not be accessed. After the full-text review, a total of six articles were retrieved. Notably, an additional paper was later identified following reference list screening. A further updated search was undertaken in April 2023 to ensure the inclusion of all peer-reviewed articles published between 2000 and 2003. Consequently, two subsequent articles were identified, bringing the total number to nine. The PRISMA (Page et al, 2021) flow diagram shows the search steps (Figure 1).

Figure 1. PRISMA flow diagram for systematic reviews (Page et al, 2021) dated between January 2000 and October 2022

Quality appraisal

A Critical Appraisal Skills Programme (CASP) (2018) tool was adopted to systematically assess and ensure the included studies' trustworthiness, value and relevance. The CASP tool is recommended by Cochrane and the World Health Organization as an evidence-based health-related research checklist (Noyes et al, 2019). The overall study quality for the nine studies was rated high, indicating high rigour in the research processes.

Data abstraction

Each study was screened multiple times, both electronically and manually, and read thoroughly so that the authors were familiar with the content and to ensure relevance and accuracy before extraction. Following the screening, the Joanna Briggs Institute Qualitative Analysis and Review Instrument (QARI) data extraction tool for extracting qualitative studies was adapted to suit the review's aim and identify key concepts from the included studies (Aromataris and Munn, 2017).

Synthesis

This narrative review used a thematic synthesis and an inductive approach (Thomas and Harden, 2008) to analyse and synthesise data. This review aimed to minimise bias and aid reflexivity by following Braun and Clarke's (2023) six-phase thematic analysis alongside an inductive approach.

The included papers are shown in Table 3.


Table 3. Overview of included studies
Author and country Aims of study Sample and study type Setting Study design and data collection method Themes Key findings
Langemo et al (2000) USA To describe the lived experience of having a pressure ulcer A purposive sample of 8 participants:
  • Ages ranged from 27 to 52 years
  • Male (n=7) and Female (n=1)
  • Four had a current pressure ulcer (stage II to IV) and surgical flap reconstruction, and the remaining four had a pressure ulcer that had healed with a recent spinal cord injury
5 participants were from the community (including nursing homes), and 3 from hospital Qualitative phenomenological studyAn inductive method with thematic data analysisUnstructured interviews
  • Perceived aetiology of pressure ulcer
  • Life impact and changes
  • Psychospiritual impact
  • Extreme pain associated with a pressure ulcer
  • Need for knowledge and understanding of pressure ulcers
  • Need for and effect of numerous stressful treatments
  • The grieving processes
All the participants stated that pressure ulcer impacted their physical, social and financial lives, making them lose their independence, body image, and social lifeThe participants who had spinal cord injury and a stage IV pressure ulcer expressed significant pain from their pressure ulcer during the treatment
Gibson (2002) UK To explore the perceptions of young men with a spinal cord injury living with a pressure ulcerTo examine if the patient's understanding of managing and preventing pressure ulcers affected their ability to maintain good skin integrity Purposive sample of:
  • 10 male participants with paraplegia
  • Ages ranged from 21 to 36 years
Community A descriptive qualitative studyAn inductive method with content data analysisSemi-structured interviews
  • Knowledge and understanding of pressure ulcer prevention
  • Impact of education upon pressure ulcer prevention
  • The psychological impact of pressure ulcers
  • Reliance on spinal injuries unit/community liaison when skin problems occur
All the participants understood the causes and prevention of pressure ulcers due to the education received during their rehabilitation programmeFour participants described the fear of hospitalisation as a psychological impact of pressure ulcersMost study participants reported that community services lacked specialist knowledge about spinal cord injury and pressure ulcers Thereby they relied on the specialist unit in the hospital for support
Fox (2002) UK To explore the perception and experiences of patients living with pressure ulcer A purposive sample of 5 participants:
  • Ages ranged 30 to 64 years, involving a female (n=1), and males (n=4) with a current and/or previous history of pressure ulcer
Community A qualitative descriptive phenomenological studyContent data analysisSemi-structured interviews
  • Physical issues: pain, exudate levels, and loss of independence
  • Psychological issues: emotional factors, worry about healing, relationships, and body image
  • Social issues: social isolation
All participants reported pain as part of their experience living with a pressure ulcerThe pain contributed to reduced activity leading to the loss of independenceAll participants complained about pressure ulcers' psychological impact, leading to anxiety, fear, and depression
Hopkins et al (2006) UK and Belgium To explore the experiences of older people living with a pressure ulcer A purposive sample of 8 participants:
  • Ages ranged from 65 to 101 years, involving males (n=3) and females (n=5) with a grade III or IV pressure ulcer
6 participants from the community (including nursing homes), 2 from hospital A qualitative Heideggerian phenomenological studyUnstructured interviews
  • Pressure ulcers cause endless pain
  • Pressure ulcers produce a restricted life
  • Coping with a pressure ulcer
All the participants described the intensity of the pain as excruciating and the worsening effects of pressure-relieving equipment
Spilsbury et al (2007) UK To explore the perception and experiences of the impact of pressure ulcers and their treatment on patients' health-related quality of life A purposive sample of 23 inpatients:
  • Ages ranged from 33 to 92 years, involving males (n=5) and females (n=18) with a grade II to IV pressure ulcer
Hospital Qualitative studyAn inductive method with thematic data analysisSemi-structured interviews
  • Patients' descriptions of their health and quality of life
  • Perceptions of the impact of their pressure ulcer
  • Perceptions of the cause of their pressure ulcer
  • Description of their pressure ulcer
  • Experiences of pressure ulcer treatment, management and care
21 patients described the level of pressure ulcer pain as excruciating. Of the remaining two, one had a neurological condition with reduced sensation, while the other had no idea that a pressure ulcer had developedMost of the patients admitted with acute, chronic conditions or pressure ulcers agreed that pressure ulcers had impacted their quality of life, for example, loss of independence, social isolation, and change in body imageMost participants complained that the level of treatment given by the health professionals was not equal to the intensity of pain felt
Gorecki et al (2010) England and Northern Ireland To know patients' experiences about the impact of pressure ulcers and interventions on health-related quality of lifeDevelopment of a conceptual framework of health-related quality of life for patients to report their measured outcomes based on their lived experiences A purposive sampling of 30 participants:
  • Ages ranged from 22 to 94 years, involving males (n=18) and females (n=12) with a recent pressure ulcer (grade I to IV), or one that had healed within the past 2 months
17 participants from the hospital and rehabilitation care centres and 13 from the community Qualitative studyCombination of inductive and deductive approaches with thematic content analysisSemi-structured interviews
  • Symptoms: pain and discomfort, exudate, and odour
  • Physical functioning: mobility, daily activities, general malaise, and sleep
  • Psychological well-being: mood, anxiety and worry, self-efficacy and dependence, appearance, and self-consciousness
  • Social functioning: social isolation and participation
All 30 participants described the impact of a pressure ulcer on health-related quality of life nearly the same way under the four health-related quality-of-life-themed domains. For example, under the themed ‘Symptoms’ domain, pressure ulcers affect their self-esteem and reduce physical and social functioning due to exudate, odour, and pain, which may lead to depression, anxiety, and frustrationNB: only English-speaking British nationals without cognitive impairment participated, which may limit the generalisability of the findings
Jackson et al (2017) UK To provide a narrative account of pain associated with pressure injury Convenience sample of 12 participants:
  • Ages ranged from 31 to 92 years, involving females (n=9) and males (n=3) with a current (n=10) or recently healed pressure injury (n=2)
Community Qualitative studyDrawn from an ongoing mixed-methods case studySemi-structured interviews
  • Poorly controlled pain
  • Uncertainty for the future
All the participants described their experiences with pressure injury as living a life of painFndings support the need for an appropriate assessment tool for pressure injury for patients in the community to enable early identification and intervention of pressure injuries
Jackson et al (2018) UK To gain insight into patients' perceptions and experiences of loss associated with a pressure injury Convenience sample:
  • 12 participants and 5 carers
  • Age ranged from 31 to 92 years, with a grade II to IV pressure ulcer
Community Qualitative studyDrawn from an ongoing mixed-methods case studySemi-structured interviews. Data were thematically analysed
  • Loss of mobility and independence
  • Loss of privacy and dignity
  • Loss of social engagement and ability to engage in preferred activities
  • Loss of control and personal autonomy
A pressure injury affected most participants, resulting in loss of mobility, independence, privacy, dignity, and social engagement
Gourlan et al (2020) France To explore perceptions and beliefs about pressure ulcer treatment and intervention in a spinal cord injury populationTo discuss potential learning objectives for pressure ulcer-related therapeutic education in patients with spinal cord injury
  • 131 participants
  • Age ranged from 33 to 58 years, involving males (n=100) and females (n=31) with spinal cord injury and a pressure ulcer (grade I to IV)
9 spinal cord referral centres and inpatient care A qualitative study using grounded theoryOpen-ended questionnaire
  • Identifying what might become problematic; theoretical knowledge on the risk of pressure ulcers, and patients' susceptibility to develop a pressure ulcer
  • Daily preventive action; involvement of caregivers, the place of equipment, body care, and daily management
  • Detecting the early signs
  • Managing the early signs; interpretation of issues and acting at the beginning of the issue
  • Need for care
  • Experience with pressure ulcer and being bedridden; on mood and anxiety, on social life, and on health
Participants reported social isolation and being bedridden because of pressure ulcers, which reduces mobility, leading to boredom and worse depressionThe study pointed to a coping strategy adopted by participants with spinal cord injury and pressure ulcers, which could have resulted from the educational programme received during rehabilitation

Results

Characteristics of included studies

Nine qualitative studies were selected for inclusion in this review, encompassing diverse settings such as communities, hospitals, nursing homes, and rehabilitation centres. The studies were conducted in the UK, Belgium, the US and France, with the most significant proportion undertaken in France (Gourlan et al, 2020). The studies used semi-structured (n=7) and unstructured (n=2) interviews to gather information from 244 participants. The participants' ages across all studies ranged from 21 to 101 years, with a higher proportion of men (n=155) than women (n=89). Notably, the studies included in this review had varied foci, such as patients with spinal cord injury (Gibson, 2002; Gourlan et al, 2020) and multiple sclerosis (Langemo et al, 2000), the impact on quality of life (Spilsbury et al, 2007; Gorecki et al, 2010), pain (Fox, 2002; Jackson et al, 2017), and the experience of living with multiple losses due to pressure injuries (Jackson et al, 2018).

Synthesis of the identified themes

Data synthesis led to the construction of three analytical themes and three sub-themes. The three major themes identified were physiological, emotional and psychological, and social effects (see Figure 2).

Figure 2. The final analytical themes and subthemes derived from thematic synthesis of patients' experiences living with pressure injury

Physiological effects

Results from this systematic review indicated that participants experienced varying degrees of pain and discomfort due to pressure injuries. Most participants reported pressure injury as significantly affecting the physical aspects of their lives, causing endless pain, immobility, dependency, and discomfort (Langemo et al, 2000; Fox, 2002; Gibson, 2002; Hopkins et al, 2006; Spilsbury et al, 2007; Gorecki et al, 2010; Jackson et al, 2017; Jackson et al, 2018).

Endless pain and discomfort Pain was found to be dominating and excruciating. Some participants in the Langemo et al (2000) study described the pain experienced as ‘sitting on a bunch of needles’ and another as ‘endless’. Similarly, discomfort was prevalent with pain from pressure injury, impeding sleep and other activities of daily living (Jackson et al, 2017). Gorecki et al (2010) identified participants whose pain was exacerbated during treatment (for example debridement) and in the use of assistive equipment (such as a hoist). Patients described the pain using sensory descriptors such as ‘throbbing’ and ‘stabbing’. However, due to the severity of pain experienced, handling by health professionals during wound dressing became additionally painful, as expressed by one participant:

‘When they clean it, it is like a needle scraping my nails. It is very painful’

Hopkins et al, 2006: 349

Participants in the Langemo et al (2000) study reported that their pain intensity was largely unrecognised by the doctors and the analgesics prescribed were ineffective, thus affecting the overall quality of their life. This was also reported by Fox (2002) and Jackson et al (2018).

Loss of mobility and independence The loss of mobility and independence was found to have a negative impact. In the study by Jackson et al (2018), a participant reported the loss of mobility as ‘very handicapping’ because it restricted movement and self-care This was also reported by Fox (2002) and Gorecki et al (2010).

Similarly, Spilsbury et al (2007) provided further evidence of the effect of losing independence and mobility in older participants. Some participants had to install stairlifts or wider doors for wheelchairs, while others sold their houses in favour of smaller dwellings and reduced their activities:

‘I thought, one of these days I'm going to fall … I'll stay downstairs and put my house in for an exchange’

Spilsbury et al, 2007

Loss of mobility can diminish an individual's independence, resulting in dependency on others (Hopkins et al, 2006). This dependency may lead to reliance on carers, as some participants felt their lives had been ‘robbed,’ making them appear ‘useless’ and ‘worthless’ (Gibson, 2002). However, the degree of dependence varied considerably among the participants (Gibson, 2002). Some participants required a more extensive care package from social services than others (Spilsbury et al, 2007).

Despite the willingness of carers and family members to provide support, younger participants conveyed a sense of resentment stemming from a perception of being a burden:

‘I'm having to rely on my sister … and she's got a job to go to, she's got a son to look after, she's got her own life to lead.’

Spilsbury et al, 2007

Hence, the diminished mobility state affects the patient's emotional and psychological wellbeing.

Emotional and psychological effects

Emotional and psychological effects emerged as a predominant theme. Most participants expressed negative emotions. Many used robust affective descriptors, including words such as ‘frustrating,’ ‘miserable,’ and ‘unbearable’ due to the duration of the wound (Langemo et al, 2000; Fox, 2002; Gibson, 2002; Hopkins et al, 2006; Gorecki et al, 2010; Jackson et al, 2017; Jackson et al, 2018).

One participant in Jackson et al's research (2017) whose pressure injuries had lasted for over 2 months with no imminent hope of recovery, described their feelings:

‘At this moment in time, as of today, it almost seems insurmountable. Pressure injury depresses me more than anything.’

Jackson et al, 2017

Additional worries, such as fear and anxiety about being hospitalised and bedridden for treatment, generated feelings of ‘hopelessness’ associated with depression (Gorecki et al, 2010; Jackson et al, 2018). These findings align with Langemo et al (2000), where participants stated that doctors' and nurses' intrusion into their privacy and dignity during treatment affected their autonomy and self-esteem, leading to despair and despondence (Jackson et al, 2017). This was reported by a participant with quadriplegia and a stage IV pressure injury:

‘The only thing is I get humiliated when the doctor looks at my sores with five, sometimes six people … sometimes they leave the door open.’

Langemo et al, 2000

Despite the clinician's education on the prognosis of pressure injuries, a participant in Hopkins et al's study (2006) demonstrated a sense of fatalism: ‘with me, I say what will be will be’. Hence, this evidence establishes a clear consensus on the emotional and psychological burden of adapting and coping with pressure injuries.

Social effects

Social and interpersonal challenges were evident in the experiences of the participants in six of the studies (Langemo et al, 2000; Fox, 2002; Spilsbury et al, 2007; Gorecki et al, 2010; Jackson et al, 2018; Gourlan et al, 2020). Most participants described physical restrictions and wound treatment inflicted by pressure injuries as a hindrance to their social life, leading to social isolation (Jackson et al, 2018).

Social isolation This was described as a loss of engagement in social activities, including activities previously enjoyed (Jackson et al, 2018). Some participants explained the impact of being bedbound and the necessity of wound care due to pressure injury as significantly affecting their social life and relationships (Fox, 2002; Gourlan et al, 2020). As evidenced by Langemo et al (2000), many participants referred to the unpleasant malodour and visible discharge from their wounds as significant factors that restricted their social interactions. Other participants with a spinal cord injury expressed similar concerns about their body image, using self-evaluative terms such as ‘ashamed’ and ‘embarrassed’ (Gorecki et al, 2010). This low self-concept affected these participants (Langemo et al, 2000; Gourlan et al, 2020), resulting in a reluctance to socialise or form new relationships, as encapsulated by a patient in one study:

‘I noticed the nurses… could hardly stand the smell of it. The smell is terrible … and to me, it's an embarrassment.’

Spilsbury et al, 2007

These emotional responses affected their self-worth, resulting in withdrawal from social activities.

Discussion

This narrative review described individuals' vivid experiences of living with pressure injuries and the profound impact on their physical, emotional, psychological, and social domains of life.

Pain was a predominant physiological effect (Hopkins et al, 2006) that negatively affected individuals (Jackson et al, 2017). Despite prescribed analgesics, the intensity of the pain was still depicted using strong evaluative and sensory descriptive terms such as ‘stabbing,’ which highlighted participants' subjective experience (Gorecki et al, 2010). However, Chang et al (2022) and Goswami et al (2023) argued that individuals with ongoing chronic conditions such as multiple sclerosis may interpret pain in the context of their existing chronic state, leading to an ambiguous pain description. Hence, it is imperative for researchers to use a pain assessment tool to assess the severity of participants' pain and help plan strategies to mitigate the pain effectively.

Immobility and independence were other key physiological aspects. Some participants experienced more pain and discomfort when assistive devices (such as hoists) were used, contributing to reduced mobility (Gorecki et al, 2010). This impact resulted in immobility and dependence on caregivers and family members (Hopkins et al, 2006), often leading to frustration and a loss of autonomy. The pain caused by pressure injuries causes immobility and dependency. In addition to the pain, the presence of comorbidities such as spinal cord injury exacerbates the pressure damage/injuries (Cornish, 2023). Hence, the NICE (2014) guidelines recommended using risk assessment tools to identify those at risk and prevent pressure injuries. Therefore, educating caregivers on the importance of quality individualised care and the proper use of a valid risk assessment tool will aid in ameliorating patients' pain and distress.

The emotional and psychological impacts of living with pressure injuries were evident across the reviewed studies. Many participants frequently expressed despair and despondency about the emotional and psychological effects of pressure injuries (Jackson et al, 2017). These findings resonate with the data found by Cifuentes Rodriguez and Gamboa (2020), where leg ulcer patients experienced emotional turmoil caused by losing control over pain and treatment. The study suggested that clinicians should adopt a care strategy that respects patients' autonomy while focusing on holistic care to promote their psychological wellbeing (Cifuentes Rodriguez and Gamboa, 2020). Therefore, this research reinforces good practice and has parallels to NICE guidelines (NICE, 2014). Altogether, a multidisciplinary approach encompassing patient-centred care is pivotal in a patient's recovery.

The lived experience of patients with pressure injuries has similarities with other reports of patients living with chronic wounds (Falanga et al, 2022). Participants' accounts of social effects, such as social isolation, were evident in a study by Jackson et al (2018) as one of the critical effects of living with pressure injuries. Exudate and malodour caused by pressure injuries created barriers to social inclusion, resulting in a reluctance to engage in social activities (Langemo et al, 2000). This concern about body image, compounded by diminished mobility, led to a ‘restricted life’ for the participants (Spilsbury et al, 2007). Klein et al (2021) described the significant impact of chronic wounds on social participation in several ways, such as social disconnection, disengagement, and feelings of loneliness. However, this review extends beyond social participation, where younger participants in a study by Gourlan et al (2020) reported ‘closeness and interpersonal communication’ as difficulties encountered in their relationships. Therefore, the convergence of these findings from various studies demonstrate the social implications of living with pressure injuries (Roussou et al, 2023). Encouraging social support systems is crucial to reducing isolation.

Strengths and limitations

The impact of pressure injuries, as seen in the studies by Langemo et al (2000) and Gibson (2002), aligns with prior research where pressure injuries extend across physical (Fox, 2002; Hopkins et al, 2006), social (Spilsbury et al, 2007; Gourlan et al, 2020), emotional (Gibson, 2002; Jackson et al, 2017), and psychological (Jackson et al, 2018) domains of life. Hence, the research significantly contributes to the field, offering insights into the effects of pressure injuries.

The absence of a second reviewer for data analysis and thematic synthesis introduced potential bias in the reliability of the results. On the other hand, increased reflexivity and discussion between the authors improved the credibility of the findings.

Conclusion

The cumulative evidence from nine qualitative studies using thematic synthesis provided a clear understanding of patients' experiences with pressure injuries. Pressure injury-related pain was a significant factor that affected patients' overall quality of life. These findings align with previous research, giving deeper insights into patients' experiences of living with pressure injuries. The scope of this review was limited to adults aged 18 and above; however, available literature contained information only on adults aged 21 to 101, with a notable bias toward males. The financial consequences of pressure injuries, such as income loss, were also not adequately highlighted. Therefore, future research should address the experiences of younger adults living with pressure injuries and further investigate the financial implications of pressure injuries. Additionally, integrating quantitative methodologies for pain assessment should be considered as this would enhance data analysis. Undoubtedly, acknowledging and addressing patients' concerns will aid in alleviating their physical and emotional pain, resulting in improved outcomes for both the individual and the health care sector.

KEY POINTS

  • Pain significantly impacts the quality of life of patients with pressure injuries. Implementing targeted strategies to alleviate pain is crucial in nursing practice to enhance overall wellbeing
  • This review underscores the importance of a multidisciplinary approach in adopting holistic care strategies to promote emotional and psychological health in individuals with pressure injuries, in line with established guidelines
  • Health professionals should recognise and address the profound social impact of pressure injuries, including social isolation, reduced social participation, and challenges in interpersonal relationships, to improve the overall wellbeing of individuals living with pressure injuries
  • Prioritising comprehensive risk assessment, and the use of valid assessment tools, are pivotal in preventing and managing pressure injuries
  • The review emphasises the negative impact of reduced mobility and dependence on a patient's quality of life

CPD reflective questions

  • How can the insights from this article guide you in developing individualised pain management strategies for patients with pressure injuries, considering the subjective nature of their pain perception and the potential impact of chronic conditions on pain interpretation?
  • Why is it important that health professionals promote patient autonomy while implementing a holistic, risk assessment approach for patients with pressure injuries?
  • How can healthcare providers enhance patient-centred care and promote psychological wellbeing in individuals living with pressure injuries and address patients' concerns regarding privacy, dignity and their emotional challenges?
  • How can health professionals proactively address the social implications of pressure injuries, such as social isolation and body image concerns, to promote a supportive and inclusive environment for individuals living with pressure injuries?