Living with pain-a systematic review on patients' subjective experiences.

Background

The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage” [ 1 ]. Pain signals physical injury but can also occur without clear damage. Pain levels and disability vary among individuals, as do responses to treatments [ 2 ]. Pain is shaped by biological, psychological, and social factors. Genetics and gender influence sensitivity, while personal experiences, beliefs, and past traumas also play roles [ 3 ].

Acute pain is a sudden, short-term experience often with a known cause. Typically lasting up to seven days, it can extend to 30 days [ 4 ]. Despite advances in pain management, 80% of post-surgical patients report acute pain, with 86% experiencing moderate to severe levels [ 5 ]. Untreated acute pain can cause complications such as deep vein thrombosis, muscle spasms, stress responses, anxiety, and chronic pain [ 6 ].

A bidirectional relationship exists between sleep, anxiety, and acute pain. Anxiety and sleep deprivation lower the pain threshold, creating a cycle of pain catastrophizing and avoidance behaviors that increase disability [ 7 ]. Early intervention is crucial, as even short-term pain can create long-lasting pain memories, leading to chronic pain [ 8 ].

Chronic pain persists beyond 3 months, causing emotional distress and functional impairment [ 1 ]. It results from diseases such as fibromyalgia and arthritis or is caused by trauma and injury. Chronic pain affects 19% of European adults, with prevalence estimates ranging from 11 to 40% [ 3 , 9 , 10 ]. Despite frequent doctor visits, many patients do not receive adequate care [ 10 ]. Within the chronic pain category, specific conditions such as neuropathic pain, fibromyalgia, and arthritis present distinct clinical and psychosocial profiles. For instance, fibromyalgia is characterized by widespread musculoskeletal pain, central sensitization, fatigue, and elevated rates of anxiety and depression [ 11 ]. Neuropathic pain, on the other hand, is associated with nerve damage, burning or shooting sensations, and poorer treatment responses [ 12 ]. Arthritis-related pain typically involves localized joint inflammation and mobility limitations, with different quality-of-life impacts compared to fibromyalgia or neuropathic pain [ 13 ].

Chronic pain significantly impacts mental health and daily life, limiting activities and social interactions [ 14 ]. Depression, anxiety, stress, and poor concentration are common [ 9 ]. Higher anxiety levels correlate with lower pain tolerance [ 15 ]. Sleep quality also worsens, increasing pain sensitivity [ 16 , 17 ]. These effects contribute to social isolation and, in some cases, increased suicide risk.

Cancer pain, linked to diagnosis and treatment, affects quality of life. Many patients fear dying in pain more than death itself [ 18 ]. Despite treatment advancements, cancer pain remains a major challenge [ 19 ]. It affects 51% of patients, with 40% experiencing moderate to severe pain [ 20 ]. Cancer-related pain can be divided into: pain directly caused by tumor infiltration; treatment-related pain from surgery, chemotherapy, or radiotherapy; and persistent pain experienced by cancer survivors, such as chemotherapy-induced neuropathy [ 21 ].

Post-treatment, cancer survivors often experience chronic pain, depression, and anxiety. Many patients struggle with healthcare access and inadequate pain management information [ 22 , 23 ]. Enhancing understanding of pain experiences across acute, chronic, and cancer pain states can improve treatment and quality of life. This study aims to systematically review and meta-analyze whether patients’ subjective pain experiences of living with pain differ between acute, chronic, and cancer pain states. We hypothesize that successful pain management requires greater emphasis on patients’ pain experiences and individualized strategies.

Methods

This systematic review and qualitative meta-analysis was based on observational, cohort, and cross-sectional studies. The review was registered beforehand in the PROSPERO database (the International Prospective Register of Systematic Reviews; with the identification number CRD42023491745) and was performed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA 2020 checklist) [ 24 ], as shown in Table S1.

The research question was formulated according to the PECO method [ 25 ], which stands for patients, exposure, comparison, and outcome, making the question easy to understand but also focused on a concise subject. With that in mind, the research's question is the following: In adult individuals (P), subjective experience (O) of living with chronic pain (E) or cancer pain (E) in comparison with acute pain (C).

Population (P): Adult individuals suffering from chronic pain or cancer pain.

Exposure (E): Living with chronic pain or cancer pain.

Comparator (C): Patients suffering from acute pain.

Outcome (O): The subjective experience of patients suffering from chronic- or cancer pain compared to the subjective experience of patients suffering from acute pain.

The inclusion criteria that were applied were as follows: (1) participants aged 18 or older; and (2) participants’ subjective experiences of chronic, acute, or cancer pain. The exclusion criteria were as follows: (1) studies presented in other languages than English, Spanish, Portuguese, Greek, and Scandinavian languages; (2) editorials, letters, legal cases, case series, and case–control studies; (3) studies and articles based on duplicated data; (4) study populations with ages below 18 years.

Search strategy and study selection

A literature search was performed in the following databases: Medline (Ovid), Embase (embase.com), Cochrane (Wiley), Web of Science (Clarivate Analytics), and CINAHL (EBSCO). The last search was conducted on 2024–04-19.. The search strategy was formulated in Medline (Ovid) in collaboration with the librarian Sabina Gillsund (SG) at the Karolinska Institutet University Library. Relevant Medical Subject Headings (MeSH terms) and free-text keywords were identified for each search topic. The search was subsequently tailored to the other databases, utilizing the Polyglot Search Translator [ 26 ] in part. No language restrictions were applied, and databases were searched from their respective inception. Since 1989, when the oldest included study was published, significant developments in pain management services, accessibility, and public awareness have taken place, which may have influenced the patient experiences described in older studies compared to more recent ones. Nevertheless, to provide a comprehensive overview of the existing literature, all studies meeting the inclusion criteria were included. An additional librarian reviewed the strategies before they were executed. Duplicates were removed using the method outlined by Bramer et al. [ 27 ], which is an efficient method for duplicate removal involving systematic comparison of reference lists and Digital Object Identifiers (DOIs), enhancing transparency and replicability in systematic reviews. A snow-ball search was conducted to check references and citations of eligible studies from the included studies, but no additional studies were identified [ 28 ]. The complete search strategies for all databases are available in Table S2.

The systematic review management platform Rayyan was used to avoid any risk of bias in the process of screening [ 29 ]. This was done by two of the authors (TM and LM) independently and blinded from each other, who screened each title and abstract. In cases of disagreement regarding potentially eligible studies, the author AR resolved the conflict, thus acting as a judge. When all disagreements were resolved, the authors (TM and LM) attempted to retrieve the full texts of the included and potentially eligible studies. All retrieved studies were then reviewed in full text by the same authors (TM and LM), independently and blinded from each other, to determine whether they aligned with the inclusion criteria or not. This was done using the Microsoft Office 365 software Excel. Any conflict was resolved by discussion with the author AR.

Certainty of evidence and critical appraisal

Methodological limitations were assessed independently by two of the authors (TM and LM), after guidance by the author MC, using the critical appraisal skills program (CASP) for quality appraisal in qualitative evidence synthesis. The CASP tool is a generic tool for evaluating the strengths and weaknesses of any qualitative research methodology, i.e., risk of bias. It includes ten questions that help assess the appropriateness of the methods used, as well as the clarity and relevance of the findings [ 30 ].

The analysis of the subjective experiences was performed using the digital tool Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual). This structured approach evaluates the reliability of qualitative research through a systematic and transparent framework. It assesses confidence in individual review findings based on four components: (1) methodological limitations, (2) coherence, (3) adequacy, and (4) relevance. Confidence is graded as high, moderate, low, or very low. All findings were initially marked with high confidence and downgraded if important concerns arose about any GRADE-CERQual components. Each review was examined independently by two reviewers (LM and TM), and their assessments were then discussed to reach a consensus on eligibility. The author EA was consulted to verify the final assessments.

Data collection

A data extraction form was designed, developed, and tested independently on five randomly selected studies by two of the authors (TM and LM) and assessed by a third author (AR) to ensure consistency in extraction. The extracted data included information on the characteristics of the included studies and study participants, such as the authors, year, country, condition (type of pain: acute, chronic, or cancer), mean age of patients, male-female ratio, participant characteristics, measurement variables, and key findings.

Data analysis

The findings and assessments were summarized in a CERQual Evidence Profile. This profile provided a brief summary of each finding, explanations for the judgments made, the overall confidence level, and references to contributing studies. It acted as a detailed record of the analysis and reasoning behind the confidence ratings [ 31 ].

All summarized review findings were subsequently organized (by LM, TM, MC, NC, and GDC) into review-finding groups, resulting in four initial themes. These themes originated from combining data aligned with the review's goals. The themes were reviewed to ensure they accurately represented the data. Each theme was named, and its meaning was clarified. A Summary of Qualitative Findings (SoQF) Table (Table 1 ) was created to present the final findings, including summaries, confidence ratings, and study references [ 91 ]. Finally, key quotes were extracted from the referenced studies to support the findings within each theme. These quotations highlighted key insights and provided direct evidence to corroborate the presented statements.

Results

Literature search outcome

The full digital literature search resulted in 20,237 studies from all included databases. After the removal of 11,794 duplicates, a total of 8,443 articles were screened by title and abstract. The screening resulted in 160 full-text articles that were sought for retrieval, of which all of them were retrieved. Then, 71 full-text articles did not meet the inclusion criteria, thus resulting in 89 included studies. The full process of inclusion is shown in the PRISMA flow diagram (Fig. 1 ).

Methodological assessment

The 89 articles were assessed as either having “no/very minor,” “minor,” “moderate,” or “serious” methodological limitations. An open discussion and consensus were reached between the three authors, TM, LM, and MC, about the assessment of articles. The following categories were reasons for articles to be assessed as “moderate” or “serious” methodological limitations: (a) lack of ethical approval from an ethics committee; (b) lack of reflexivity by the authors; (c) lack of rigor in data presentation and/or insufficient selection of participants; (d) or the lack of disclosure of the selection method. The individual assessment of the 89 articles is presented in Table S3.

Characteristics and confidence assessment of included studies

Based on the confidence assessment of the 89 included articles, 62 showed moderate ( n = 18) [ 35 , 39 – 41 , 50 , 54 , 56 , 60 , 67 , 70 , 73 – 75 , 78 – 81 , 90 ] to high ( n = 44) [ 14 , 19 , 22 , 32 – 34 , 36 – 38 , 42 – 49 , 51 – 53 , 55 , 57 – 59 , 61 – 66 , 68 , 69 , 71 , 72 , 76 , 77 , 82 – 89 ] confidence, thus assessed as having high enough quality suitable for this review. The primary reason for the exclusion of articles was the lack of ethical approval by an ethics committee, with 13 articles being excluded [ 92 – 104 ]. Lack of rigor in data presentation was also a contradictory factor to an article being evaluated as low or very low quality, resulting in the exclusion of 6 articles [ 105 – 110 ]. Additional reasons for 7 articles evaluated as low or very low quality were an insufficient selection of participants [ 18 , 111 – 115 ] or the lack of disclosure of the selection method [ 116 ]. One article was also excluded because it did not focus on the subjective experience and was therefore deemed irrelevant [ 117 ], shown in Fig. 1 .

The studies included were interview studies investigating the subjective experiences of adults (> 18 years old) with acute, chronic, or cancer pain. The characteristics of the included studies are presented in Table 1 , including information on the following: (a) Author(s), year of publication; (b) Country; (c) Condition (i.e., type of pain: acute, chronic, or cancer); (d) Age of patients (mean (range)); (e) Exposure groups (no. of patients); f) Male-to-female ratio; (g) Participant characteristics; (h) Measurement variables; (i) Key findings; and (j) Assessment of confidence.

Summary of review findings

The review findings summarized in the CERQual Evidence Profile resulted in the following four main themes: (1) impact of pain on social life, work life, and family life; (2) challenges in healthcare access; (3) psychological impact and emotional struggles from pain; and (4) barriers to effective pain management, shown in Table 2 . The reasoning, methodological limitations, coherence, adequacy, relevance, confidence of evidence, as well as reference to the studies contributing to each theme are also presented in Table 2 . Below follows a presentation of each theme including key quotes extracted from the referenced studies highlighting the key insights.

Impact of pain on social, work, and family life

The first theme identified was the “impact of chronic, acute, and cancer pain on social, work, and family life”. Patients suffering from chronic and cancer pain reported experiencing higher levels of social isolation compared to those with acute pain. In many studies, participants with chronic non-malignant and malignant pain mentioned altering plans or avoiding certain activities when pain was anticipated or present:

You know when [the pain is] going to come, and what you have to do is plan your life around it. So, in other words, usually I don’t try to plan anything [at] those times so that I know that I will hopefully be safe [ 45 ].

Oh well I can’t walk, I can’t go shopping in malls and things like that. I'm no use to my friends because they're all active, everybody wants to go for a walk and I can't [ 37 ].

Previously, when people invited me to parties or to meet people, I have abstained due to the pain . . . //So now people are tired of this, so I’m not now invited anywhere, except by the family. I’ve lost a lot of friends and social . . . //I didn’t think about it before when the pain was at its worst. I don’t know if I’ve done something wrong in these situations [ 83 ]

Acute pain also affected patients’ daily activities, but the pain appeared to have a more temporary impact on their lives:

Yes you know because of this pain hmmm I could not do things like bathing, lifting, sleeping, it was not very easy for me at all people had to even assist me in bathing and the others....[ 76 ]

Social withdrawal, in turn, affects both intimate and family relationships. According to the studies included in this systematic review, patients suffering from chronic and cancer pain experience feelings of helplessness, dependence on others, and difficulty reshaping their relationships:

...I just can’t get used to it. It is hard to accept. It is worse than the [physical] pain, I can tell you that, it is worse than [physical] pain...I can endure [physical] pain more than I can endure being helpless...Like I say, the things I ask for, I feel like they are not really unreasonable, should be expected. It is so hard to live with somebody [ 43 ].

It [chronic pain after cancer treatment] has totally, utterly ruined my life and my family’s and my marriage. Everything. . .. I mean my relationship with my husband has I would say virtually broken down. . .. It’s [chronic pain after cancer treatment] destroyed a person. It’s destroyed a person’s marriage. It’s destroyed a person’s family. It’s destroyed a person’s friendship group [ 22 ]

I feel like I would be a burden to them. I am not able to participate in all the things that we could do in the past. Water skiing and stuff like that. We were very active in the group of friends I was a part of. So, I will just become a limitation to them. If I am there, I know they will say no to some of the things they would like to do. Why should it affect them, that I have been injured? I know it's wrong, because they don’t think that way, but I just feel that it is best for them [ 36 ].

Acute pain also leads to feelings of helplessness and desperation in the moment:

[...] when I got hurt I was at home, alone, the pain came on so quickly and there was no one there to help me, it was horrible and terrifying. You need help and you don’t know who to call, you don’t know how to fix it, the pain doesn’t allow you to think, and that is what put me into a state of desperation [...] [ 66 ]

But hoping for a better day tomorrow gave the participants strength to endure their acute pain at the time:

So I had [a feeling of] hope the whole time.... I could see... and they also told me, “Look you can do this today, [which] you could not [do] yesterday” and this also gives you hope for the next day, so you think, “I just need to have this pain now ... maybe a little less pain tomorrow”... so that also helped you through the sickness and staying awake [ 51 ].

Participants with chronic cancer-related pain experienced a different kind of suffering compared to the acute pain during their cancer treatment, as it led to hidden distress. This ongoing pain impacted their self-perception:

I’m grateful. I’m blessed that I was able to fight it, and I should be happy. should be dancing on air, but it’s just not like that, and pain is one of the things added to the mix [ 55 ]

Sometimes you feel a little lesser than everybody else, cause they’re not walking around in pain and I am. No one, no one really understands they don’t understand how bad it is and that hurts [ 55 ]

A common characteristic among participants across all studies suffering from chronic and cancer pain was their experience of being on full or partial sick leave due to long-term pain. This was viewed as a temporary, uncomfortable, and undesirable situation. Many expressed a strong desire to return to work as a means of overcoming their current circumstances:

Firstly, I cannot work because of my pain, it affects my financial circumstances, and it affects me socially. It is like a line, you need to have all in succession, when you have a good economic situation, then you will also have it well socially. When you are healthy, then you are socially well too; it is a circle—when you are losing a ring, then you are losing it all. In my situation, many rings are missing, both money- and health wise. Then you just feel empty inside [ 68 ].

You come to a point when you have to stop [working] because you’re totally exhausted and have to be on sick leave more and more often. It isn’t worth it [ 57 ]

It has had a huge impact on my work. I can’t continue my original work anymore [ 88 ].

Challenges in healthcare access

The second major theme identified was challenges in healthcare access. One of the main factors influencing patients’ experience of healthcare was communication. Patients suffering from acute pain in intensive care felt isolated and powerless when unable to communicate their pain effectively. The term “intensive care” specifically refers to acute pain experienced by patients admitted to intensive care units, where complex clinical conditions, invasive procedures, and treatments further complicate pain management [ 118 ].

I was upset because I thought, here I am, I don’t lay down for nothing, I never have, I have got terrible pain ... He [treating doctor] said he wants me to go home ... I could have punched him you know [ 44 ].

... you’re in pain but you are being told by your doctors ‘‘No, no you haven’t got pain, it’s just a pain you’re feeling in your head’’. It just destroys you completely and it gives you a double burden to carry and that’s what had happened to me and I was destroyed by it [ 42 ]

In contrast, patients who felt supported stated that they could communicate their pain level using a familiar instrument (NRS) and had attentive caregivers who stayed close while the pain eased. Caregivers’ acknowledgement and willingness to communicate played a crucial role in restoring a sense of control:

People like this... they do their job and were professional... but there was joy and happiness and they told me jokes and it felt so enjoyable even through all of the pain... they lifted me up...and... yeah.. I could not believe it ... they see all this every day and do this all the time ... it was like they were pumping life in my body... I felt like I needed to live [ 51 ].

But we have to know the scales. We need to speak the same language....something I haven't had until this time – same language as they speak here (at the hospital) [ 51 ].

Patients suffering from chronic and cancer pain often felt that they lacked understanding of the cause of their pain:

It is just as important to understand your pain, as it is to accept it. If just I could get a proper explanation from a healthcare professional about why I am in pain, why it is the way it is, and why nothing can be done to make it better. Then hopefully all my speculations and worries would stop, so I can start concentrating my energy on some of the other challenges I need to tackle. That would make my life a lot easier. My head is completely filled with speculations about my pain and worries about what is going to happen in the future [ 36 ].

I just desperately wanted to know what was wrong with me and I mean I remember doctors saying ‘‘Oh it’s really good news. We didn’t find anything.’’ And me being really frustrated and saying ‘‘How is that good news?’’ and they were you know ‘‘You should be really pleased. There’s nothing dangerously wrong with you.’’ But I was just desperate to know what was going on because it was having such an impact on my life [ 42 ].

The lack of trust and support from healthcare professionals made participants feel misunderstood, preventing them from getting the help they needed to manage their condition:

The lack of help and responsiveness from healthcare professionals has left me with a feeling of helplessness. (..) So, I’m quite angry at them, and I’m having a hard time trusting healthcare professionals, because I thought they were there to help me. When you experience that isn’t how it is, then you become distrustful. And you start feeling that you’re not able to get the help that you need. It’s ridiculous they won’t help a young person like me. Maybe things had not come this far, if I had been able to get some help – but I couldn’t [ 36 ].

Many patients with cancer also felt like they were not informed about chronic pain after cancer treatment:

They told me it would be painful for a little while. And when I was into this several years in, I told my oncologist that the pain’s still going. She says you might have it permanently. And I said, why didn’t you tell me that in the beginning? [ 55 ]

Survivors of cancer mentioned receiving less medical attention as the cause of their pain was unclear or when no solutions were found:

They basically say, ‘Right, you’ve finished your treatment. Off you go. Goodbye. . .’ it is the feeling of being discarded [ 22 ]

Barriers to effective pain management

The third theme regarded pain management within patients suffering from chronic, acute, or cancer pain varies and is caused by poor assessments, limited treatment options, and hesitation from doctors to prescribe strong medications. The findings of the studies presented a variation of different pain management methods used by patients depending on the type of pain they experienced.

Keeping busy with different hobbies or jobs was an effective pain management method for chronic or cancer pain patients, acting as a distraction from their pain. Others relied more heavily on their relationships with friends and family as they expressed how it helped ease the pain.

Mari (ID16) found a way of distracting herself from negative emotions and pain. I bake bread… [ 48 ]

Distracting activities included reading, watching television, doing needlework or cooking, meditation or praying, travelling, meeting friends and attending activities run by an occupational therapy auxiliary [ 34 ].

Patients stated how their belief in God and the practice of their religion/spirituality were effective coping strategies used to reduce the feelings of distress and anxiety:

I have been a believer for a long time. Even now, I call on God hundreds of times a day. I know that pain is the destiny of God. Even now, I rely only on God. I only hope God makes me better [ 72 ].

When a patient loses himself and his faith in himself, I believe, he cannot overcome problems. To overcome all of these problems (illness and pain, for example), I must help myself; I must believe in myself [ 19 ].

The feelings of being misunderstood contribute to further barriers in pain management:

Just look at me. Can you see any of my aches and pains? My God, I look great, don’t I? So how can you believe me when I say this whole body hurts all over, all of the time? [ 79 ]

If my journey that time had great doctors, the great support system, my journey would have been different because I would not have cried so much, I wouldn’t have so many sleepless nights at home [ 75 ].

Psychological impact and emotional struggles from pain

The fourth major theme identified was the psychological impact and emotional struggles resulting from the pain experienced by patients. The main result of the pain across all pain types was feelings of distress and anxiety:

I became isolated, withdrawn. Pain just destroyed my life took over my life. The anxiety was running parallel with the pain…[ 58 ]

Anxiety fuels pain: the things I hear, I see, I smell and can be damp down by things that are safe, pleasurable, adding value to my life…. [ 58 ]

Patients also expressed how the experienced pain resulted in thoughts of death:

When I have this pain, I often fall asleep at night hoping I will not have a silent MI. I hope I will wake up in the morning [ 54 ].

I have never thought that all of a sudden I would get a deadly disease like cancer, but now I know, and whether or not I will get to live over Christmas I don’t know [ 60 ].

A prominent emotion shared among the different studies and pain types was the loss of self-worth and shame:

My life has no value anymore. I can’t do anything. I lost my dignity as a human being [ 19 ].

I feel bad when I am in too much pain and I ask my son or spouse for help. I cannot feed my son, meet his needs, or be a good mother. I cannot fulfill responsibilities to my family. I’m still ashamed [ 19 ].

Rose (ID7), pretended to have had a fulfilling day when the family asked her what she had been doing. She said: I am ashamed of being useless, so I pretend, to protect them and retain some degree of dignity – even though it is false [ 48 ].

Discussion

The main finding of this review was that living with acute-, chronic-, and cancer-pain presents significant challenges, impacting overall life circumstances and mental health [ 22 , 45 , 76 ]. Patients often face difficulties navigating the healthcare system, feeling dismissed and unacknowledged [ 42 ]. They also experience a lack of information and difficulty finding appropriate care or support, which creates barriers to effective pain management. Consequently, patients resort to self-management strategies. A patient-centered approach is crucial for improving outcomes and providing adequate support for individuals with pain.

Impact of pain on social life, work life, and family life

Chronic, cancer, and acute pain profoundly affect various aspects of life, including social, work, family, and intimate relationships. However, the effects differ significantly based on the duration and intensity of the pain. Chronic pain often leads to social isolation due to fatigue and fear of being misunderstood [ 37 , 45 , 83 ]. Similarly, cancer pain causes emotional isolation due to fear of disease progression [ 55 ]. Acute pain, however, typically seems to result in only temporary social withdrawal, with individuals generally returning to normal social activities after recovery [ 76 ].

Psychological factors, such as anxiety, depression, pain catastrophizing, and fear-avoidance beliefs, play a pivotal role in shaping patients’ pain perception and disability. The fear-avoidance model illustrates how catastrophic interpretations of pain lead to avoidance behaviors, reduced activity, heightened sensitivity, and reduced quality of life [ 119 , 120 ]. Coping mechanisms like cognitive-behavioral therapy, mindfulness-based practices, and acceptance strategies have been shown to foster resilience, reduce catastrophizing, and improve functioning [ 120 , 121 ].

Chronic pain significantly affects work life, often reducing productivity and leading to frequent absences or job loss due to physical challenges [ 57 , 68 ]. With a prevalence of approximately 20%, the economic burden of chronic pain reaches up to US$635 billion annually in medical costs and loss of productivity [ 10 , 122 , 123 ]. Cancer pain has an even greater impact on employment due to both physical and emotional difficulties [ 88 ]. Acute pain, on the other hand, generally causes only temporary work disruptions. Chronic pain, especially post-cancer treatment, creates lasting emotional strain, making individuals feel vulnerable and disconnected from their former selves [ 43 ]. This often causes significant disruptions in marriages, family life, and friendships, with some patients feeling like a burden to others [ 22 , 36 ]. This can further lead to withdrawal from social interactions. In contrast, acute pain disrupts family routines in the short term, and individuals generally return to their normal roles and activities once they recover [ 51 , 66 ]. Hence, pain frequently undermines social and occupational functioning, leading to social withdrawal, workplace absenteeism, and role disruptions. Many patients report feelings of stigma, a loss of identity, and diminished self-worth accompanying persistent pain [ 124 , 125 ]. Family caregivers often experience elevated stress, social isolation, and emotional burden, highlighting the ripple effects of pain on close relationships [ 126 ].

Challenges in healthcare access

Healthcare relationships play a critical role in pain management, regardless of pain type. Many patients with chronic pain feel misunderstood by healthcare providers, leading to frustration and isolation [ 36 , 42 ]. Many individuals with chronic pain, including those experiencing pain after cancer treatment, struggle to find effective care or solutions [ 55 ]. A lack of empathy, awareness, and long wait times exacerbate these challenges, making it difficult for patients to receive effective care [ 36 ]. Cancer-related pain often continues post-treatment, leaving patients feeling abandoned [ 22 , 55 ]. The failure to acknowledge pain severity contributes to emotional distress and inadequate resources for coping.

Effective patient–provider interaction, characterized by empathy, shared decision-making, and clear communication, is essential for positive pain outcomes. Literature indicates that mismatches between clinician and patient goals, as well as a lack of empathetic listening, often leave patients feeling misunderstood or dismissed [ 127 ]. Shared decision-making tools have shown promise in enhancing trust, patient satisfaction, and adherence, and in reducing opioid misuse. Implementing such tools and training clinicians in communication skills could greatly improve patient experiences and treatment effectiveness [ 127 ].

Effective communication is essential for pain management. Patients with acute pain, especially in intensive care, often feel isolated and powerless when unable to express their pain [ 42 , 44 ]. However, when healthcare providers communicate effectively and show empathy, patients feel more supported and in control. The approach and help of the nurses contribute to easing their physical pain and improve their spiritual well-being [ 19 ]. Tools like the NRS help standardize communication, ensuring patients feel listened to and acknowledged [ 51 ].

Personalized treatment approaches, tailored to individual patient characteristics, preferences, and values, show substantial promise in pain management. Pharmacogenomics-based interventions for cancer pain [ 128 ] and multidisciplinary rehabilitation strategies that combine pharmacological, psychological, and physical therapies have demonstrated improved outcomes for chronic pain patients [ 129 ]. Psychological resilience can be enhanced through integrated therapies like cognitive behavioral treatment (CBT), mindfulness, and acceptance approaches [ 120 , 130 ].

Barriers to effective pain management

A lack of support and recognition from healthcare staff is a common issue among patients suffering from different types of pain. Insufficient information about proper care and neglect from healthcare lead to feelings of helplessness and anxiety, which worsen pain experiences [ 75 ]. Many patients rely on spirituality as a coping mechanism, particularly those with acute and cancer pain [ 19 ]. This was more prominent among patients suffering from acute and cancer pain than among those suffering from chronic pain, where other coping strategies were more commonly emphasized, such as finding a balance in their daily life to cope with the pain by for example staying physically active, maintaining hobbies, and/or seeking support from friends and family [ 70 ].

Support from friends and family plays a key role in pain management [ 19 , 43 ]. Some patients, however, fear being perceived as “too whiny” and limit expressing their pain [ 79 ]. This delicate balance between seeking support and maintaining independence can hinder effective coping.

Despite various coping mechanisms, no patients described their strategies as ideal. Many had to accept their new lifestyle and develop self-management techniques [ 59 ]. Inadequate care forces patients to create their own treatment plans, complicating recovery. The PainSTORY study found that among chronic pain patients dissatisfied with management, 67% experienced no improvement, and 11% reported increased pain over 12 months [ 10 ].

Psychological impact and emotional struggles from pain

The psychological effects of pain are well-documented for chronic, acute, and cancer pain. However, few studies compare their similarities and differences. Psychological stress, anxiety, and depression both result from and exacerbate chronic pain. Pain catastrophizing, where patients anticipate and amplify their pain, intensifies emotional distress and heightens pain perception, creating a vicious cycle [ 46 ].

Pain affects concentration, sleep, and memory, leading to a severe psychological burden [ 46 ]. Most studies highlight that psychological stress worsens pain perception, reinforcing the bidirectional relationship between pain and mental health.

While fewer studies examine the mental health effects of acute pain, a common theme emerges. Patients describe significant psychological distress, with thoughts of death and death anxiety being prevalent, especially among cancer patients [ 19 ]. However, cancer pain, often associated with terminal illness, presents distinct psychological challenges compared to chronic non-malignant pain. Chronic conditions like fibromyalgia or back pain do not carry the same life-threatening implications, influencing patients’ perceptions of their pain. Psychological support must therefore be individualized based on disease type and impact on life.

Study strengths and limitations

This study followed rigorous methodology, including PROSPERO registration, the PECO framework, and PRISMA guidelines [ 24 , 25 ]. Expert-assisted searches across multiple databases ensured reliability, with selected articles rated as high to moderate confidence.

A key limitation was the scarcity of data on acute pain experiences. Only five studies met inclusion criteria for acute pain, compared to 44 on chronic pain and 13 on cancer pain. This discrepancy may limit conclusions regarding acute pain and its subjective experience. The limited number of studies available on acute pain restricts comprehensive comparisons and might introduce bias in interpreting differences between acute, chronic, and cancer pain categories. Future research should aim to address this gap. Furthermore, because acute pain is often studied in highly context-specific situations, such as postoperative or intensive care environments, the available evidence may not adequately represent the full spectrum of acute pain experiences. This contextual narrowness could bias interpretations and restrict generalizability, underlining the need for more diverse qualitative studies in acute pain [ 3 , 4 ].

Moreover, future systematic reviews should consider incorporating studies from additional languages to minimize linguistic exclusion bias, particularly from regions such as Asia, Africa, and Central Europe, where qualitative research is often published in non-included languages. Restricting inclusion to English, Spanish, Portuguese, Greek, and Scandinavian languages may therefore have limited the comprehensiveness of the synthesis. Important qualitative perspectives on pain experiences may be underrepresented, particularly from regions where research is frequently published in other languages such as Mandarin, German, French, or Arabic. This language restriction could thus reduce the representativeness of findings and introduce cultural bias in the synthesized evidence [ 24 , 131 ].

Even though all studies meeting the inclusion criteria were included, to provide a comprehensive overview of the existing literature, another limitation concerns the broad time span of included studies, dating back to 1999. Pain management practices, healthcare accessibility, and societal attitudes toward pain have changed considerably over the past 25 years. Notably, the IASP revised its definition of chronic pain in 2020 to better capture its multidimensional nature [ 1 ]. As a result, older studies may reflect historical contexts and definitions that differ from contemporary standards, which could influence the subjective experiences reported. This temporal heterogeneity should be acknowledged when interpreting findings, as it may affect the synthesis between older and more recent research.

Clinical implications and generalizability

The clinical implications of this study are of great value, as its findings have the potential to change the current outlook on pain management within healthcare systems. The results from this study suggest that placing more focus on patients’ pain experiences and individualized management strategies results in better pain management. While previous research primarily focuses on each pain type individually, this study compares the different experiences and highlights the importance of individualized assessment for successful pain management. Placing more focus on patients’ pain experiences requires healthcare providers to be more attentive to their patients’ concerns. This means listening to patients’ complaints and experiences with pain, rather than just focusing on symptoms. The findings of this study could be generalized, especially for chronic pain, since sufficient information was collected, and all relevant aspects were taken into account.

To translate these findings into practice, concrete measures should be considered. For healthcare education, this could involve integrating patient narratives and qualitative evidence into medical and nursing curricula, as well as simulation-based training modules in empathic listening and shared decision-making. Policy initiatives might include mandating the systematic use of validated communication tools such as the NRS, with adaptations to reflect patient-centered contexts, and promoting interprofessional collaboration in pain management. Establishing multidisciplinary pain clinics that combine medical, psychological, and social support could also facilitate individualized, holistic care [ 127 – 129 ].

Future applications

This systematic review can serve as a foundational reference for future studies exploring the subjective experience of pain. The findings emphasize the need for further research to enhance our understanding of the complex nature of pain, its consequences, and patients’ reports about their experience with pain. By expanding the knowledge base in this area, a more comprehensive view of the impact of pain can be developed, which in turn would be crucial for refining pain management strategies. Recommendations for healthcare professional education and policy include enhancing awareness of subjective pain experiences, incorporating patient-centered communication training, and promoting multidisciplinary collaboration to improve pain management outcomes. It is also important to study the long-term effects of pain on social relationships and work life, as well as how well current pain management strategies are working. This would then result in improved pain care and consequently in better quality of life.

Conclusion

Chronic, acute, and cancer-related pain significantly impact patients’ social, work, and personal lives. Many face inadequate recognition and support from healthcare providers, leading to reliance on self-management strategies and barriers to effective pain relief. Pain further contributes to mental health struggles, including catastrophizing, reduced self-esteem, and identity loss. Further research is necessary to deepen understanding of how different pain types affect patients’ lives and mental health, ultimately improving pain management strategies.

Supplementary Information

Additional file 1. PRISMA 2020 checklist.

Additional file 2. Search strategy.

Additional file 3. Methodological assessment.

Acknowledgements

We would like to express our gratitude to the librarian Sabina Gillsund at the Karolinska Institutet University Library for her valuable assistance with the literature search.

Abbreviations

Critical appraisal skills program

Confidence in the Evidence from Reviews of Qualitative Research

International Association for the Study of Pain

Numeric Rating Scale

Patients, Exposure, Comparison, and Outcome

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

International Prospective Register of Systematic Reviews

Summary of Qualitative Findings

Authors’ contributions

NC, MC, EA, and GDC contributed to the conceptualization and methodology. TM, LM, and AR contributed to article inclusion, data collection, and data extraction. TM, LM, MC, and EA contributed to data curation, while MC, NC, GDC, TM, and LM contributed to data analysis and interpretation. MC, LM, and TM wrote the original draft, while NC, EA, GDC, and AR reviewed the manuscript. Finally, all authors read and revised the manuscript prior to submission.

Funding

Open access funding provided by Karolinska Institute.

Data availability

Data is provided within the manuscript or supplementary information files.

Declarations

Ethics approval and consent to participate

Not applicable since this is a review; however, all analyzed studies had to be ethically approved in order to be included.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Footnotes

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Associated Data

Supplementary Materials

Additional file 1. PRISMA 2020 checklist.

Additional file 2. Search strategy.

Additional file 3. Methodological assessment.

Data Availability Statement

Data is provided within the manuscript or supplementary information files.