Study screening methods.

The search identified 12,022 studies. All were imported into Covidence, a web-based collaboration software platform that supports organisation of material in systematic review and collaboration between team members [26]. 5,317 duplicates were removed, which left 6,705 titles and abstracts. All 6,705 titles and abstracts were independently screened by five co-authors (EW, AG, AZ, CG and SS) in Covidence. For reasons of rigour, two co-authors (AG, CG) independently double screened 671 articles (10% of all items), which were allocated at random, to ensure that eligibility criteria were applied consistently. A discrepancy of less than 10% of 671 double screened articles were resolved by discussion of how the study met the eligibility criteria. Screening of the titles and abstracts led to exclusion of 5,916 articles and 789 remained.

All of the full text articles of the 789 titles were retrieved and read to determine eligibility. Two co-authors (CG, AZ) independently reviewed 79 (10%) of full text articles, allocated at random and met to resolve disagreements by discussion of how the study met the eligibility criteria (SS, CG, AZ). At this stage, 721 articles were excluded, largely because they were either not based in the UK, did not meet inclusion criteria, or were studies of interventions (Fig 1: PRISMA flowchart for more details). This left 68 included studies, which were augmented by a further 3 studies identified from hand searching of citations. Therefore, in total the review included 71 articles.

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Fig 1. PRISMA flowchart detailing the results of screening and selection process.

https://doi.org/10.1371/journal.pone.0327984.g001

Study quality appraisal.

The methodological quality of the final 71 articles was evaluated by the first author independently using the Critical Appraisal Skills Programme (CASP) checklist [27], a tool originally developed for educational use and focused on reporting transparency, but more recently used for quality appraisal in qualitative evidence syntheses [28]. Each study was reviewed against the CASP checklist, with attention to the appropriateness of research design, recruitment strategy, data collection methods, ethical considerations, rigour of data analysis and credibility of the research findings. Trustworthiness in qualitative research refers to how credible, transferable, dependable and confirmable the findings are [29,30]. The trustworthiness of the included studies was evaluated though the CASP questions that focus on analytic rigour, and the statements of findings in relation to the coherence between the data collected and the findings. As part of this, we examined how each study addressed data saturation or equivalent approach to data adequacy, as these are key indicators of methodological depth and sampling adequacy [31,32]. We noted whether authors explicitly reported on data adequacy and how its achievement was described (e.g., though iterative analysis, absence of new patterns in the data or researcher judgement). Where achievement of saturation was not explicitly described, we considered a range of other indicators of data sufficiency including data richness; sample size relative to the method and likelihood of attainment of ‘information power’; and depth of analysis [33]. Three co-authors (EW, CG, AL) independently assessed 7 studies in total, allocated at random (double screening 10% of all items). There were no discrepancies to resolve between reviewers. Studies that addressed some or all of the CASP criteria were included in the synthesis and no studies were excluded based on quality (S3 file).

Review reporting and confidence in evidence.

The review is reported in keeping with the ‘Enhancing transparency in the synthesis of qualitative research’ statement (ENTREQ). ENTREQ recommends that reviews report on 21 items, and information about how this review delivers these is provided in S4 file [34].

Confidence in evidence from reviews of qualitative research can be assessed using the GRADE-CERQual approach. This provides guidance about four components that authors and users of reviews of qualitative research might use to assess how much confidence to place in review findings. These components are: methodological limitations; relevance of the individual study findings to the aims of the review; coherence of the data across studies; and adequacy of the data [35]. GRADE-CERQual recommends that four components are made clear by authors of reviews to enable users to make decisions about their confidence in the review. In design and reporting of this review we have attended to the components of GRADE-CERQual.

Characteristics of included studies.

Sample sizes of the included studies ranged from 5 [36] to 63 [37,38] participants, with a mean of [39] approximately 18 participants, and a total of 1,291 participants. The reported gender of participants was 753 women and 451 men; five studies did not disclose the gender of participants. Eight studies reported including only female participants [12,14,16,19,40–43], and five studies reported including only male participants [44–48]. As previously stated, we only included studies that made use of empirical material collected in the UK. At least twenty one studies recruited people with ethnicity identified as White British or European [16–18,40,43,47–61], nine studies recruited people of Asian ethnicity [18,19,40,50,52–55,62,63], two studies recruited participants of Caribbean ethnicity [55,56], one study recruited participants of Chinese ethnicity [51], and other studies reported participants from a variety of ethnic backgrounds [41,54]. Not all studies reported ethnicity of participants. The age range of participants was 18–92 years. The methods used to collect data included interviews, observations, focus groups, diaries, fieldnotes and photographs. Duration of participants’ pain ranged from 3 months to 64 years. Studies explored a range of pain conditions: back pain [12,18,52,53,57,58,60,64–72], rheumatoid arthritis [17,19,36,47,48,55,56,73–75], fibromyalgia [36,42,43,49,63,64,71,72,76], osteoarthritis [15,45,64,77–81], knee pain [13,82–87], spinal pain [37,38,88], pelvic pain [14,41,44], widespread pain [11,71,89], migraines and headaches [90,91], and endometriosis [40]. Supplementary material (S5 file) provides a comprehensive breakdown of study characteristics.

Data extraction and synthesis.

Information about study characteristics and methods were extracted by the first author (SS) in collaboration with co-authors (EW, AG, CG) using an electronic spreadsheet so that key information was extracted accurately and consistently [92] (see S5 file). Two co-authors (AG, CG) double-screened 10% of the studies by independently extracting information about study characteristics and methods, and any discrepancies were discussed and resolved with third co-author (EW).

Full text articles of 71 studies were uploaded into NVivo qualitative data management software [93,94]. In line with Thomas and Harden’s [24] three-stage method for thematic synthesis, all text under the headings results, discussion and conclusion sections were included in the analysis, encompassing both participant quotations and the authors’ secondary interpretations [24]. Reading text line by line, material was coded by the first author, assigning labels (codes) that referred to the content and meaning of sections of text. Code labels related directly to the material, but nonetheless—and with a slight refinement of Thomas and Harden’s approach—included a degree of interpretation in which labels drew attention to social phenomena that related to pain experience. When coding was complete, material was then grouped into themes, or categories, that contain relevant material from all the studies. Next, each theme was re-examined to examine and explore any similarities and differences that required development of any sub-themes and to develop, broader analytical themes that provided collation and synthesis of the material into a further, interpretive layer. To ensure rigour, co-authors (CG, SS) independently double-coded material within several sub-themes and discussed the findings with co-authors (EW, RGH).

Patient and public involvement statement.

A public contribution group of seven people living with pain met quarterly as part of the wider research programme. We met eleven times between Sept 2022 and Oct 2024, and on five occasions (Sept 2022; Nov 2022; Sept 2023; Jan 2024; April 2024) the discussions and activities related to this systematic review. The Public Contributors had detailed discussions with researchers to help interpret the findings and they thought that the results presented in this review related to the experience of living with long term pain. In addition, Public Contributors identified areas in experience of pain that they thought were not addressed in the included studies. The Contributors suggested that such areas might warrant future research. For instance, they were interested in how beloved pets contribute to the pain experience, whether access to green spaces made a difference to pain, and whether intersectional identities (e.g., ethnicity, gender, socioeconomic status) impacted on access to appropriate care for pain.

The role of family.

Analysis highlighted that chronic pain, family responsibilities and sociocultural norms and values interact and cannot easily be disentangled. Many studies reported that family and friends are main sources of support for people with pain as their lives become increasingly difficult [39,41,49,67,74,75,85]. Studies suggest that people felt fortunate to be supported by understanding family members, recounting empathy and closeness [40,53]. Equally, family expectations, emotional support and a willingness to recognise the pain condition with associated limitations were all important contributors to feeling validated [11]. Living with chronic pain can compromise the function of the family due to relying heavily on family or partners for help with day-to-day tasks [49,71,91]. When in a flare of increased pain, it is reported that participants asked for help to complete daily tasks, such as getting dressed [18,67,74]; this can result in feelings of inadequacy [71], or families found ways to adapt activities to be inclusive to the person in pain [68]. Studies reported that whilst family and friends offered physical and emotional support, participants felt that significant others did not take their condition seriously or support and empathy subsided over time [39,50]. Some studies reported that people felt that no matter how much their friends and family believed they understood, they would never be able to truly grasp how much pain they are in [88].

Living with chronic pain can affect the functioning of the family in various ways, and people living with chronic pain can feel like a burden on the family. Studies reported that participants understood the strain and distress that their need for support placed on family members and this awareness contributed further stress that increased their pain [19,49,88] and in some cases led to family breakdown [43,49,60,62]. The role change within the family life due to pain can be difficult and can lead to social embarrassment, fragmented relationships and decrease their psychological and emotional well-being [18,69,85]. Self-silencing and hiding pain was reported as a way to maintain some level of normality, avoid dealing with people’s reactions or to protect the emotional wellbeing of the people they shared their lives with, but often resulted in feelings of loneliness [39,40,72]. This can also mean that people pushed through the pain, and ignored it as much as is possible in order to participate in family activities or social events, accepting that some activities would have future consequences for their pain worsening [40,42,74,81,83].

Studies suggested that more distant family connections had less knowledge and awareness of the pain experience and were less likely to offer understanding, due to the invisible nature of pain [11,19]. When people lived alone, it was reported that some were reluctant to call upon extended support networks and unwilling to disclose the extent of their problems to others, worsening pain, whilst others felt fortunate to have access to their extended family and accepted their family’s awareness of their impaired function [85]. It is reported that some people preferred to pay someone rather than ask a family member or accept a favour, due to feelings of embarrassment that they cannot do it themselves or repay favours [48].

Caring for others in the context of living with chronic pain.

Studies reported how the process of caring for others contributed to their own wellbeing and created distraction from their pain [16,37,38,45,62]. However, pain can interrupt the valued social cycle of caring for children as part of performing social roles and responsibilities, rather than being cared for by others [19]. Studies reported on the role expectations of women as caretakers, and despite the limitations of pain, women strove to maintain their caring roles and not let anyone down [19,40,85]. For example, studies reported that parents living with increasing debilitating pain affected their ability to function and increased their need of support from others [41,56]. The physical requirements of parenting can be challenging and many studies reported that parents found it difficult to look after themselves and their children [41,49,67], and that physical contact with children, such as hugging or participating in some activities, can increase pain [49,71,90]. Some participants attempted to function and fulfil their obligations as wives and mothers despite knowing it would increase their pain [18,43,95].

Intergenerational dynamics.

Social expectations about roles within families can mean that women felt responsible for looking after their elders [11,19]. This involved a degree of emotional labour, particularly when the parent believed pain to be hereditary, and worrying about parents was highlighted as a trigger for pain onset [11]. Parents of people who live with chronic pain can be a source of support as they can relate and understand the pain situation [11]. Furthermore, studies reported that grandparents provided invaluable support to their adult children living with pain, helping with their grandchildren [41]. Spending time with the grandchildren can improve or worsen the experience of pain. For example, studies reported that grandparents experienced a lot of pleasure that boosted their wellbeing when sharing valued activities with grandchildren, although it increased pain [37,38,83]. Conversely, some grandparents felt unable to interact with their grandchildren as they wished to avoid increasing their pain [13,47,71], and some feared alienation from family because of this [37].

Intersectionality in the context of families.

Studies reported how intersectionality plays out in the lives of Punjabi women, particularly when pain interrupted traditional social norms and values around gender roles, expectations and family duties [18,19]. Sanderson and colleagues [19] illustrated the moral imperative to minimise the social impact of their pain to avoid personal and familial stigmatisation [19]. Punjabi participants reported a lack of empathy and understanding from their community [18], and one way to demonstrate normality to others, was to avoid engaging in social activities that would bring attention to their pain situation, which further limits their access to support [19].

The role of friendships.

Living with chronic pain can cause disruption to maintaining meaningful relationships with friends. Importantly, this review is concerned with how friendships influence pain transitions rather than how pain can affect friendships. Arguably, this process is circular and complex, but what is reported here prioritises how social experiences within friendships influence transitions to and from chronic pain. Some studies reported that people living with pain felt socially invisible and excluded by friendship groups due to not being able to join in with previously shared activities or perceiving themselves as poor company [51,60,67,71,96]. Others pre-emptively limited their social life to avoid any negative impact on friends, priding themselves on being able to hide pain, often resulting in feelings of loneliness [40,66,97]. At times friends simply did not understand, nor did they try to understand [18,48], and in some cases people living with pain became friendlier with healthcare providers than with childhood friends [96]. Friends might comment on the appearance of a pain condition, for example, walking oddly [53], or describe them as moaning if they mention the pain [48]. Friends tried their best to understand but still expected a lot from the friendship or forgot due to the invisibility of the pain condition [42,47,66]. Friends can provide valuable support and distraction from the pain [53,56,74]. Non-judgemental friends who accepted the pain condition continued to be close and provided invaluable support [49,53,62,72,85].

Social connections within the local community.

Studies reported the importance of social support and how this was found in the local community, for example, neighbours, church or committee members, and local volunteering [16,37–39,56,61,85]. These connections provided opportunities outside the home, to connect with others (e.g., luncheon clubs) whilst distracting from the pain [16,37–39,86,15]. When social support was limited, people typically opted to pay for services to avoid burdening others [38,47,48,85]. Studies reported the difficulties and hazards of people accessing social environments due to uneven, cobbled or poorly designed streets [86,15]. Pain could be exacerbated when visiting family, friends or local activities due to negotiating different environments, crossing roads and using public transport [13,15,60,61,63,67,98]. Those residing in rural areas are reported to have higher rates of chronic pain [61]. Overall, these findings underscored the multifaceted nature of living with chronic pain and the complex interplay between individual experiences, that highlights the interdependence with environments and other people [19,13,37,72,84,15].

The role of social isolation.

Uncomfortable feelings emerged when people living in pain worried about how they would be seen by others and when they began to find it easier to avoid social situations [57]. Many studies reported how social isolation was common, and in this section we illustrate how social isolation intersects with pain to varying degrees.

Difficulties sustaining social life, maintaining relationships and taking part in activities, whilst avoiding isolation, were well documented [12,43,67,71,78,80,90,95,96]. Studies reported that people avoided participating in previously shared activities or social activities to avoid appearing unsociable, because they believed they were incapable of supporting the needs of others or that they were poor company [12,67]. The inability to sit or stand due to pain created embarrassment and, in some cases, social invitations diminished [12,18,19,57,71,96]. When social networks were unable to understand, support or validate the experience of living with pain, people deliberately loosened social ties and became unwilling to share experiences with others [49,88]. Studies reported the tension between needing to withdraw from social life and the fear of isolation [12,40,41]. As pain increased (e.g., due to a flare) there was a tendency to socially withdraw due to apathy and lack of motivation to participate in normal activities [14,74,97].

Despite understanding the usefulness of social support, people wanted to avoid being a burden or letting people down, or changed their behaviour to avoid having to ask for support or understanding, aware of the limits to others’ compassion [12,40,88]. Disengaging from social interactions was a way to prioritise relationships with friends and family, preserving a positive mindset and protecting themselves and others from unnecessary distress [50,69]. However, having a reduced social network can foster ruminating about the pain [62] and diminish opportunities often resulted in low mood, which further restricted access to activities and often reduced the desire or ability to socialise [12,43,67,69,74,78,80,95,97]. Social withdrawal appealed to some on the basis of not having to behave in certain ways, which was seen as an additional task to living with pain, and on those occasions, they looked forward to going home to get relief from the social situation and uncertainty surrounding pain [38,57].

Studies reported that people with few or no social links were more likely to experience pain that interfered with daily life [38]. When participants wanted to be alone due to the pain it affected their relationships with others [78,90,96] and some blamed themselves for not being able to explain their pain adequately to others [49,88]. Rebuilding support networks with other people living with pain, through support groups, social media and online communities helped to reduce isolation [49,55,74,76,82,88,91].

Daily routine household tasks.

Studies reported that activities associated with tasks of living (e.g., cooking, cleaning) often triggered pain onset, tasks often took longer to complete, and the action of the tasks increased their pain [13,41,52,97]. For example, pushing and pulling a vacuum cleaner [41], standing for long periods to cook [52], completing household repairs [60,75], and other daily household tasks were often reported as difficult and painful, which in some cases resulted in relying on others to complete them [11,39,41,52,53,55,56,69,87]. Studies reported that routine tasks outside the home (e.g., shopping) increased their pain due to pushing the shopping trolley and walking long distances [41,51,71,87]. Strategies to fulfil shopping tasks and minimise the pain were to shop more frequently but buy less or sit down frequently, with mixed success [56,75,95]. A consequence of not being able to fulfil family and cultural expectations by completing routine household tasks meant that participants felt a burden to the family [11,18,19,69,97]. Conversely, it is reported that people used mundane routine activities to ease their pain by alternating body positions in relation to various tasks to move through the pain [83]

Commensality and nutrition.

Commensality refers to sharing a meal with others and studies reported that some participants believed that a change in diet would improve their pain condition but that was not always possible within the financial demand of the family [49]. Where it was possible to manage diet while living with others, some foods were avoided or increased [42,54,55]. What is missing from this literature is an account of how sharing a meal with others as a social interaction or having a different diet and not being able to eat with others may influence their experience of pain transitions.

Sociality of sleep.

Sleep is included in this review where sleeping is related to a social life, but does not comment on interactions between sleep and pain. Sleep disruption can result from sharing a bed with a partner [41], and when there is limited social support, women sleep on the sofa, sometimes for extended periods of time and sometimes with their children [41,56]. When pain disturbed sleep, Reynolds et al [16] reported on how some people created artwork with the specific intention of reducing the experience of pain.

Participation in social activities.

Studies reported the difficulties of attending celebratory events (e.g., weddings, funerals, parties, socialising events) while accommodating pain, which could result in family upset or pushing through the pain, making pain worse in the following days [12,42,75,78,95]. Studies reported that participants concealed their pain and avoided social gatherings to avoid embarrassment, moral judgements and stigmatisation [19,95]. The experience of living with pain placed limitations on previously shared activities, which could result in adapting lifestyles to avoid particular social settings to reduce perceived stigma or shame [12,38,43,58,75,95,15,98,99]. Studies reported that people found alternative ways to socialise with friends (e.g., socialising in the home rather than going out or going out but engaging in more passive socialising) to accommodate pain [106,67,78]. Skipping medication was reported as a way to participate in shared activities, drink alcohol and enjoy all that holidays have to offer [74]. Maintaining participation in valued social activities and keeping the mind busy can provide a distraction from the pain [38,15].

Participation in hobbies.

The relationship between engaging in hobbies and pain transitions is complex and individualised. Many studies reported that participants believed that regular exercise reduced their pain [42,47,54,63,68,81,84,86,15]. Enjoyment was reported as a reason to maintain the meaningful activities, pushing through the pain, knowing that pain might increase as a result [74,81,82,86], whereas other studies reported that engaging in hobbies made pain worse and that pain was reduced by decreasing playing sports, leisure pursuits or exercise [16,63,87,98,99]. People withdrew from previously enjoyed social activities when the action of participating increased their pain or they were embarrassed about not being able to keep up with others [47,48,51,71,75,80,95,98] Participating in hobbies in relation to pain improving or worsening may be influenced by other things, such as variability of pain during the day [16,51,86] or seasonal variations (for example, playing football in cold conditions that made pain worse) [51]. Studies reported that some people maintained their valued social activities with the purpose of maintaining or making new friends and interacting with others [38,45,63,82,83]. The action of participating in hobbies triggered pain but people found ways to adapt so that they could maintain meaningful activities [13,16]. Studies reported that when people could no longer physically maintain meaningful activities, such as walking in the countryside, they used painting or walking books to prompt memories of meaningful places, maintain connection with nature, and their deep absorption relieved pain [16,15]. Studies reported that reducing participation in social activities to cope with pain could reduce opportunities for social connection with others and diminished connections with meaningful activities, leading to social isolation [16,52,75,97].

Workplace relationships.

It is reported that employee-employer communication and relationships were important to maintain work when living with chronic pain [64]. Understanding employers who accepted and believed their employees and made adjustments around their chronic pain symptoms enabled people living with pain to maintain employment [17,42,49,64]. The type of work, working environment, and length of workday were reported to influence the pain experience [19,47]. Understanding and flexibility can be enacted in terms of adjustments to work patterns, workload, homeworking or by providing aids [17,41,42,49,64,76]. However, organisational support, flexibility and workplace adjustments could be short-lived and withdrawn according to the interpretation and implementation of sickness policies [17,60].

Studies reported that having support, understanding and respect from work colleagues was an important part of being able to maintain work, in relation to pain [19,40,64,72]. Making and maintaining work-related friendships were hard with prolonged absences around fluctuating pain symptoms [71]. Moreover, describing the pain condition to others was difficult and could create problems in explaining absences from work [14]. Studies reported that workplace adjustments were important to enable people living with pain to return to work, feel valued, boost productivity and remain in work [17,64]. However, colleagues sometimes lacked understanding of the pain or of the need for workplace adjustments due to the invisible nature of pain [42]. Increased dependence on co-workers to complete the work increased feelings of guilt and created tension in relationships [53,66]. Moreover, the difficulties of having repeated, unchanging conversations about their pain condition was reported [54].

Retirement.

Pressure to work irrespective of pain made some people feel unfairly treated [60,100], which in some instances resulted in early retirement [17,47]. Employees were more likely to accept the outcome of organisational decisions when the process was perceived to be fair and transparent [64,100]. Sickness policy was reported to be open to interpretation so difficult to navigate in relation to fluctuating symptoms in relation to pain [17]. Studies reported that people took early retirement, sometimes before they felt ready, because the organisation did not make reasonable adjustments, employers put pressure on them or they had difficulties maintaining the job due to pain [16,17,38,47,53,83]. For some, early retirement increased social isolation and changed the dynamics of their relationships [16,83], whereas others reported that retirement gave them more time to cope with the pain [47].

Financial disadvantage.

Studies reported the financial pressures to continue working despite pain because they felt unable to handle the financial reduction consequent on time off work [45–47,70,82]. Job loss or reduced hours signalled the loss of financial independence, reduced social lives, support, social status and role shifts within family dynamics [39,41,48,53,56,60,80,97]. Financial strain was reported to lead to marital strain and family breakdown [60].

When pain fluctuates it can mean loss of income, and studies reported on the difficulties of navigating the welfare system [65] and the felt sense of injustice [100]. Pain is not visible to others and ‘officials’ were reported as hostile to claimants, questioning if pain was genuine and challenging the extent to which people were disabled by pain [49,65,67,71,100]. These judgements were not limited to the benefit system, but ongoing public discourse that filters down into everyday interactions within the local community that could bring scathing judgements and stigmatisation of the person with chronic pain [49,60,100].