Understanding ethnic minority service user experiences of being invited to and attending group pain programmes: A qualitative service evaluation

Abstract

Introduction

Health inequalities continue to exist for individuals from an ethnic minority background who live with chronic pain. There is a growing recognition that an individual’s experience of pain is shaped by their cultural beliefs, which may influence their decisions about managing their pain.

Aims

This service evaluation aimed to (a) understand experiences of service users from a Black, Asian or other ethnic minority background of being invited to and attending a group pain programme in one secondary care pain rehabilitation service. (b) Provide recommendations to develop culturally grounded services to better meet the diverse needs of all service users living with chronic pain.

Method

Semi-structured interviews were conducted with five service users who had been offered a place on a group pain programme within the last 3 years. The interviews were recorded and transcribed verbatim. An interpretative phenomenological analysis was used to identify themes in the data.

Results

The analysis produced three themes (1) Pain, Ethnicity and Coping: Perceptions of pain and coping in relation to ethnicity and intersectional factors, alignment to a self-management approach. (2) Communication for Decisions: Experiences of ethnicity and culture in relation to health professional communication about group pain programmes, participants’ expectations and fears. (3) Feeling Included: Experiences of feeling included or excluded in group pain programme, relationships and empowerment during the group pain programme.

Discussion

The five service users shared a range of perspectives on how they felt ethnicity shaped their experience of the group pain programme. The findings suggest that adaptations to group pain programmes can make a meaningful difference for service users from ethnic minority backgrounds. 10 recommendations are suggested, including greater exploration of cultural beliefs during assessment, improving accessibility of information about the service and engaging more diverse attendees and facilitators.

Background

Chronic pain is commonly defined as pain lasting more than 3 months, which becomes a long-term condition in itself. ¹ Chronic pain is a global public health problem, thought to affect up to 37% and 41% of people in higher- and lower-resourced countries, respectively. ² For approximately 34% of people living with chronic pain, this interferes considerably with their daily activities ³ and chronic pain is now recognised as a leading cause of disability worldwide. ⁴ The dominant biopsychosocial model posits that the experience of chronic pain is shaped by complex interactions between interlinked biological, psychological and social factors. ⁵ As such, psychology and/or physiotherapy-based group pain programmes are recommended to help people adjust to living with chronic pain and take steps to self-manage their condition, to improve their quality of life. ⁶

Chronic pain and pain management services are not experienced equally among members of the population. ⁷ Amongst several factors, decades of research suggests a person’s ethnicity may affect their experience of chronic pain and pain treatments.^8–10 Ethnicity in this context has been argued to refer to groups of people with particular shared behaviours, culture, history, experience, ancestry and beliefs. ¹¹ A large survey in the UK suggested individuals who self-identified as Black or Asian in ethnicity were more likely to report chronic pain than those who self-identified as White. ¹² In the USA, studies have suggested that Black Americans with chronic pain may experience more disability and symptoms of depression and post-traumatic stress disorder, less control over pain and more suffering than their White counterparts.^13,14 Amongst interlinking issues at the individual, provider and system levels, there may be ethnic differences in beliefs about the meaning, inevitability and socially prescribed coping mechanisms for coping with pain, including whether and how to seek help. ¹⁵ A person’s cultural beliefs about the meaning of pain may influence their pain management decisions, such as whether and how to seek help from health services. ¹⁶

Once they have sought help for chronic pain, ethnic group differences and health inequalities are also seen in relation to people’s experiences within the healthcare system.^17,18 Language and health literacy barriers are thought to play a role for some people from ethnic minority backgrounds. ¹⁹ However, racial stereotyping and implicit and explicit bias among healthcare providers are also important factors influencing their chronic pain treatment decisions and population health outcomes Green, 2003.^13,14,20 Research suggests physicians underestimate pain scores of African Americans and that they are less likely to be prescribed opioid analgesics or referred to surgery for chronic pain than White Americans.^21,22 Provider speciality, sex and ethnicity have all been shown to affect decisions with regards to analgesic prescriptions and referrals for therapy for people with chronic pain. ²³ Furthermore, ethnicity also intersects with other demographic and socioeconomic factors (e.g. immigration status, disability, employment status, language, faith) to produce healthcare disparities. ²⁴ For example, individuals in socially deprived areas tend to receive shorter primary care appointments than those living in higher socioeconomic areas. ²⁵

Less is known regarding the experience of individuals from varying ethnic backgrounds receiving combined psychological and physiotherapy rehabilitation for chronic pain. ²¹ As the gold standard chronic pain rehabilitation approach (BPS, 2010) group pain management programmes were originally developed and evaluated with English-speaking and predominantly White individuals ²⁶ and based on Cognitive Behavioural Therapy (CBT) principles. The limited research available suggests that Pain Management Programmes (PMPs) may offer similar improvements in depression levels and pain interference for Black and White Americans, but reductions in pain may be more likely among White participants. ²⁷ The latest NICE ²⁸ guidelines for chronic pain highlight the need to ‘be sensitive to the person’s socioeconomic, cultural and ethnic background, and faith group, and think about how these might influence their symptoms, understanding and choice of management’. (p. 9). Current UK guidelines recommend pain teams to offer PMPs in different languages, such as through interpreters, whilst acknowledging the current lack of evidence addressing effectiveness of pain management in people from culturally and linguistically diverse backgrounds. ⁶ With a lack of meaningful qualitative evaluation from within NHS services, it is not always clear what these guidelines mean for individuals and services or how best to implement these in practice. ²⁶ For instance, some NHS services have piloted language and culturally adapted PMPs tailored for particular ethnic groups. ²⁹ Others have advocated for open discussion of cultural and religious beliefs about pain within a mixed ethnicity PMP. ³⁰ There may be other unexplored, idiosyncratic factors impacting on people from ethnic minority groups’ decisions and participation in PMPs.

This qualitative service evaluation aimed to explore ethnic minority service user experiences of being invited to and/or attending a group pain programme. In particular, the study aimed to:

• (1) Explore whether and how service users perceived their ethnicity as playing a role in their experience of being invited to and/or taking part in a group pain programme.

• (2) Develop recommendations to enhance the experience and effectiveness of group pain programmes for service users from ethnic minority groups.

Method

Design, setting and context

This service evaluation took an idiographic qualitative approach to exploring service user perceptions, experience and individual meanings of being invited to take part in a group pain programme. ³¹ Interpretative Phenomenological Analysis IPA ³² was applied, as this methodological framework is particularly useful for understanding lived experience within naturalistic settings such as hospitals. ³³ Following UK government guidance, ³⁴ in this study, we applied the term ‘ethnic minorities’ to refer to all ethnic groups apart from the White British group. Ethnic minorities also include white minorities, such as Gypsy, Roma and Irish Traveller groups.

The study setting was a secondary care NHS pain rehabilitation service with a catchment area with a diverse metropolitan population in North West of England. Within the area, 43% of Lower Super Output Areas are within the most deprived 10% in England according to the Index of Multiple Deprivation. ³⁵ A routine audit of 200 referrals to the service from March to July 2019 had indicated that 64% (n = 128) of individuals referred were of White British ethnicity according to their NHS record, 24.5% (n = 49) were identified as being from an ethnic minority group. This was made up of people from Asian/Asian British backgrounds (n = 24), mixed ethnicity backgrounds (n = 7), Black/Black British/African backgrounds (n = 6), people from a white non-British background (n = 5) and those identifying as belonging to another ethnic group (n = 7). A further 11.5% (n = 23) people had not identified their ethnicity on their records. Given the substantial ethnic minority population and equity research discussed above, the team found it important to understand service users’ experiences.

In this secondary care pain service, the first appointment is usually medical with a consultant in pain medicine to address any diagnostic or medication issues and for consideration of medical interventions. When pain is to limited to a specific area of the body, medical intervention might include injection therapy to block nerves or radiofrequency denervation. These medical interventions are passive treatments that do not require the service user to engage in any self-directed changes in behaviour. Other treatment options are available within the multi-disciplinary team, including referral to the physiotherapists and psychologists. This would be for consideration of more active, self-directed changes in pain coping behaviour, often referred to as ‘pain self-management’. ³⁶ Service users interested in this pain self-management approach are invited to attend an information session explaining more about this approach before being invited to a multi-disciplinary team assessment with the psychologists and physiotherapists in the team. As a result they may be offered one of two types of evidence-based group pain programme to assist their pain management.

The more traditional PMP is a delivered jointly by a physiotherapist and psychologist (using elements of Cognitive Behavioural Therapy). The PMP is designed for service users with high levels of pain-related disability and pain-related distress, delivered in a group setting. The main focus of the PMP is to help service users to regain their confidence with movement and to improve their mood. This is achieved by explaining the science behind why pain is not always an indicator of ongoing damage in the body, which helps with confidence about movement and gradually returning to valued activities. The PMP also explains the circular relationship between stress and pain and offers training in behavioural stress management skills such as diaphragmatic breathing exercises and relaxation. There are sessions on recognising when negative thoughts are causing and maintaining problems with strategies for challenging and testing out the evidence for this. Service users are encouraged to apply these skills to everyday pain-related problems, devising specific goals for continued progress in these areas.

In our service, the PMP was previously delivered as a 60-hour in-person programme two full days per week over 5 weeks, requiring 10 full days attendance in total. In Summer 2020, during the COVID-19 pandemic, the team developed an online version of the PMP, shorter in duration than previously (36 hours) and delivered as 6 hours per week (2 sessions of 3 hours) over 6 weeks. ⁶ The online PMP continued to be delivered jointly by a physiotherapist and psychologist.

Alternatively, service users may be offered a place on a psychology-only Compassion Focused Therapy (CFT) based Pain Programme (referred to here as CFT-PP). This 24-hour, 8 week programme was delivered in person by pain psychologists until Spring 2020 and currently online during the COVID-19 pandemic. This relatively new approach is thought to be particularly useful for people living with pain who tend to be highly self-critical and push themselves to remain highly active whilst ‘striving’ to fight pain, resulting in a boom-bust cycle of pain ³⁷ and an overall decrease in activity over time.

The service evaluation team were all members of the pain team with interests in service evaluation and health inequalities. Most interviews were conducted by a Trainee Counselling Psychologist identifying as Black Mixed-Race ethnicity with interest and expertise in qualitative methodology and racism research. One interview was conducted by a Clinical Specialist Physiotherapist and PhD fellow with expertise in cultural barriers to pain management, identifying as White British. They were supported in the project by a Health Psychologist working in pain and public health of White British and Irish ethnicity and a Consultant Clinical Psychologist working in pain, of White British ethnicity. The team met monthly to discuss the project between April and December 2021.

Recruitment

A purposive sampling approach was taken, aiming to explore diverse experiences of service users with potentially different ethnic backgrounds, all of whom live with long-term pain. The service evaluation team presented the project at pain multi-disciplinary team meetings and requested team members to identify potential service users who met the inclusion criteria for the study. These were as follows: (a) service users self-identified as being from ethnic minority backgrounds identified in the audit, (b) had been invited to a group pain programme in person or online (whether or not they decided to attend and/or completed this) in the last 3 years and (c) could speak and read the English language, since in this pragmatic evaluation interpreting facilities were not available.

The service evaluation team posted an invitation letter, information sheets and consent forms to 12 potential interviewees identified by the study team. These detailed the purpose of the interview, information about the interviewers, discussed ethical issues and confidentiality and offered a choice of videoconference and telephone and various timings. A team member telephoned each potential interviewee once a week later to answer any questions.

Interviews

An interview schedule was developed by the project team with open-ended questions surrounding service users’ perceptions of the influence of their ethnicity and culture on their pain and pain service experience. A copy is included in Appendix 1. Semi-structured interviews were conducted by either AE or DY. Both are trained interviewers and interviews were organised to ensure the interviewer had not been part of the service user’s journey in the pain team. This aimed to help service users feel more comfortable about honestly sharing their experience and reduce potential influence of power dynamics. Interviews took place in the English language, either on Microsoft Teams or via telephone (due to COVID-19 restrictions) and were audio or video recorded (service user’s choice). There was no restriction on timings, service users were free to speak for as long as they chose. Service users were alone, none chose to bring a friend or family member. Recordings were stored on a secure NHS password-protected computer and transcribed verbatim by the interviewers AE and DY , with removal of all identifying details. Recordings were then destroyed.

Analysis

The analysis followed the principles of IPA, ³² with the focus on exploring how the individuals interviewed made sense of their experiences within the pain service. Analysis followed the six-step process suggested by Smith et al. ³² Initially, all authors took an idiographic approach to understanding interviewees’ perspectives in their contexts, immersing themselves through reading and discussing each transcript and interview as a whole and making notes on observations (content, language use, context, preliminary interpretations). Following this, one author led the analysis by AE abstracting their notes into emergent themes before connecting and clustering themes within and across interviews. These were then discussed with the team and a dual (double hermeneutic) interpretation process was applied, with the team attending to descriptive features of interviewees’ accounts whilst formulating and discussing interpretative critical questions. Internally consistent super ordinate themes were discussed and ‘sense checked’ within the service evaluation team which were represented by all the participants in the study, following Snelgrove and Liossi. ³⁸ These were revisited and renamed by the team in response to peer review.

Ethical issues

Completion of the National Health Service Health Research Authority decision-making questionnaire indicated that ethical approval was not required. The NHS Trust Research Office peer reviewed the proposal and confirmed that no further local approvals would be needed for this service evaluation.

Whilst not requiring formal ethical approval, it is vital that high ethical standards are maintained in service evaluations. ³⁹ In this service evaluation, informed consent was received from all interviewees, who confirmed that they understood that the interview was entirely voluntary and their decision about participating would not affect their care in any way. Service users were assured that the team welcomed all comments and suggestions to improve the service. They were informed that recordings would be securely stored then destroyed following transcription and that they would then not be identifiable in transcriptions and from any quotes used in publications. Interviewees were also assured that they could withdraw their consent at any time until their data were analysed and provided with the interviewer’s contact details. Informed consent was gathered both for interview participation and sharing of their anonymised data.

Findings

Participants

Six service users responded to the posted invitation or telephone call and booked an interview. Five service users ultimately took part; one service user cancelled their interview due to work commitments. Interviewees were four women and one man, aged between 38 and 59 and interviews lasted up to 65 min. Three identified as Asian British, one as ‘Black Other’ and one as of ‘Any Other Ethnic Group’. One service user had completed a PMP, two had completed a CFT-PP, one had decided not to take up their invitation of a place on a PMP and another had attended two sessions of PMP before choosing not to continue. Three interviewees described being currently employed, one described being a carer, one described being unemployed. Service users had been living with pain for between 7 and 30 years, with a mixture of presentations as commonly seen in our pain service (Lower Back Pain, Chronic Regional Pain Syndrome, Lupus, Rheumatoid Arthritis, Fibromyalgia, Chronic Widespread Pain).

Themes identified

Three superordinate themes were identified from the transcribed interviews: Pain, Ethnicity and Coping, Communication for Informed Decisions and Feeling Included. These are described in Table 1 and elaborated below. We include quotes of service users wherever possible to ensure their voices are heard directly.

Table 1.

Description of themes identified in the analysis.

Pain, ethnicity and coping	Communication for informed decisions	Feeling included
Perceptions of pain and coping in relation to ethnicity and intersectional factors, alignment to a self-management approach	Experiences of ethnicity and culture in relation to health professional communication about group pain programme, service users’ expectations and fears	Experiences of feeling included or excluded in group pain programmes, relationships and empowerment during the programme

Pain, ethnicity and coping

A key aspect of service users’ accounts surrounded their views of pain, ethnicity and useful coping mechanisms. Whether and how ethnicity and culture played a role in their pain experience varied substantially. Several Service Users (SU) could identify ways that their ethnicity had shaped understandings and meanings about pain from their earliest memories. SU2, a man of British Pakistani ethnicity who had experienced pain since his teenage years, discussed that his parents had adopted a style of somewhat passive optimism, with limited understanding or discussion about pain:

“How you are brought up really aint it. How like your parents speak with you. They just said that it will get better. You just tend to hide the pain and try to only show the good…. Mom didn’t know anything about the operation now neither did I. Not knowing if it’s going to work or not. imagine probably just keep believing that you are going to get better” SU2

He himself had found religious coping to be valuable: ‘I read the Quran, that makes me feel better’, but also felt it was important to talk with others about his pain experience, particularly his brother and sister. These positive experiences of social support may have influenced SU2’s desire to join a group pain programme despite some of the approaches used being against his perception of the cultural norm:

“African people and Asian people don’t bother with things like that they think that they can do without it. But [when in] pain anything that helps is much better than doing nothing to help yourself.” SU2

SU5’s account also emphasised the importance of religion in her understanding of pain and of effective and less effective coping strategies:

“In our culture and in our religion if you get hurt and so much pain, we always got optimistic. We have, in our religion, a perception that we are gonna be worth it for tolerating that pain. From Allah. White people here get hopeless and depressed so much quicker than others. That’s not just about me but about my knowledge in our community.” SU5

SU5 saw her spiritual beliefs as giving meaning and hope to her experience and leading to coping strategies aiming towards pain reduction:

“We use science and we use prayers as well. We should be looking after both and in our religion, we have to seek a reason and find a solution to it. It’s not only about the prayers but prayers definitely will help to eliminate that pain.” SU5

SU5 felt these contrasted with the approaches of accepting, adapting to and living with pain taught on her group pain programme and discussed by group members from a White ethnic background. SU5 described these perceptions as key to her decision to stop attending the PMP mid-way through the group pain programme.

SU3 eloquently described more challenging experiences of pain and ethnicity, which for her were also influenced by age and gender. She felt ‘There is still some influence of our Asian heritage and sort of expressing pain, especially when you’re young was always frowned upon’. She described pain as being ‘reserved for the older Asians’. She felt she could trace this stoical approach back to shared historical female work practices:

“Almost harking back to the days of when the women working in the field, where there’s given birth in the morning, and then wrapped the newborn to the back … they’re back to the field that evening, or the next day, and sort of coming, being open about pain, chronic pain, and sort of fibro and that sort of thing I think generally as a community, it’s very difficult” SU3

SU3 described personally now avoiding evening prayers during Ramadan because of the ‘scowls from older ladies’ when she would need to sit down because of her pain, ‘almost like a disgrace, how dare you’. She felt that this stigma applied to other areas of health and wellbeing, linked to important family issues such as a young person’s marriage prospects:

“In the Asian communities, things like depression and chronic pain still carry quite a lot of stigma. For example, we have primarily we have arranged marriage processes. So when you are looking at suitors for your son or your daughter, you know, people say that they’ve got a health condition that health condition will be held against them … So talking about health and being open about health is not something that’s very common within the Asian community….because you get deemed as though you’re not that perfect diamonds that we’re searching for. And therefore, you’re asked to go on to the reject pile” SU3

SU 3 felt that this meant that especially for women, the culturally preferred coping strategy is to ‘get up and sort of get on with it’:

“Firstly, when you’re young, you don’t have pain, but even if you have pain, you have to almost ignore it and forge on through. And if you allow the pain to prevent you from doing what you’re required to do, whether that’s your duty, as a wife and a mother, or whether that’s going out and getting a job, then you’re a failure” SU3

Understandably, SU3 felt strongly that these experiences made it difficult for her to firstly acknowledge and accept chronic pain and emotional struggles, and also to seek talking therapies. She herself, however, appeared to feel a sense of pride that she had overcome these difficult cultural barriers to attend the group pain programme.

In contrast, SU1 and 4 did not feel that ethnicity and culture directly influenced their pain experience. SU1 discussed ethnicity and pain in concrete terms, as being worse in the UK’s cold winter but still present even back in her warmer home country, so therefore not strongly related to ethnicity. SU4 noted that she was born in England and did not perceive her ethnicity to play a meaningful role in her experience of pain or the pain service.

“In terms of the pain itself, as a core, I can’t think of anything that would make it any different from someone from a different ethnic background….And yet, there’s a lot of emphasis put on cultural differences which don’t necessarily exist.” (SU4)

The importance of ethnicity in shaping understandings about pain, pain coping strategies and willingness and ability to engage with pain management approaches offered by the service seemed unique to each individual. Collectively, service user accounts highlighted the dangers of making assumptions around potential ethnic differences or offer a ‘one adaptation fits all’ approach in pain management.

Pain service recommendations

• (1) Pain psychologists and physiotherapists should extend assessments to explore cultural beliefs and expectations in greater detail, specifically asking service users if their ethnicity and culture influences how they view their pain and coping strategies. There should be open discussion of if and how these could best fit with group pain programmes offered by the service.

Communication for informed decisions

Service users also discussed ethnicity and culture in relation to their interactions with professionals before their invitation to a group pain programme and how well this had enabled them to make an informed decision about attending.

SU3 described having little initial information about the pain service in general and group pain programmes from the GP, which she felt hampered her ability to make an informed choice about being initially referred:

“It’s almost you’re going in blind and saying yes to some things without really understanding what it’s about. And I think especially for sort of like Asian people sort of sharing your life stories and things like that is the exception rather than the norm… I would say that if we could if the GPs were a bit more informed or able to disseminate more information before an individual says, Yes, I want the referral or not.” SU3

SU3, she discussed having more confidence to discuss treatment options openly with GPs rather than hospital staff:

“you almost feel compelled at that stage… if I reject this referral, I do actually need help…I’m not going to ask if any other different types of support would suit me. this is the particular treadmill that I’ve been placed on. And I have to see this, you know, I have to continue on this treadmill until I get to the other side.” SU3

Her account also highlighted that group members may continue attending a group pain programme to be seen as engaging with support, even if they are not perceiving any benefits from attending. She discussed that for those of her ethnicity, communicating with NHS health professionals could be fraught with worry about ‘undermining their authority by asking them any particular questions’ around health interventions, such as ‘Why are we taking this approach? What does this mean? How will that work’? which she worried could lead to the professional becoming offended and ultimately discharging the person from their ‘avenue for help’. SU3 felt this was particularly common amongst older Asians or those using interpreters and that more understanding from NHS professionals of these power dynamics and reassurance about the value of asking questions would be helpful:

“I don’t know if that’s because of, you know, where they lived and grew up, and they had that experience, or whether it has they experienced when they first came to these countries, and you know, that English was poor, and they had communication issues, etc, etc. …but I do know that the older the person is, the less likely they are to question anything. …especially with an interpreter, they would be very reluctant to sort of ask any sort of questions… there may have to be a lead on from the NHS side to say that we’re volunteering information, you can ask these questions, we’re not offended.” SU3

Positively, SU3 felt that when she met with the psychologist who had introduced her to the ideas behind the group pain programme, her fears around being forced to disclose difficult emotions or early life experiences were allayed:

“It was an unusual concept of what you mean about compassion in pain. And so, sort of speaking with (the psychologist), and sort of getting an understanding of what the course is on .. that gave me a bit of reassurance” SU3

Similarly, the potential benefits of having more information at the invitation stage were echoed by SU2, who felt this would help increase informed decision making and allay any fears:

“I knew nothing about it. It took some time getting used to the idea of it …I made myself think that it is okay that I don’t have to hide things….information on what to expect that makes people more at ease making them feel good … Mentally, it takes a lot to go somewhere … a pamphlet or maybe like a little pack or something…just like a handbook of happiness that just explains why to go…that it is a way of living.” SU2

The powerful metaphor ‘handbook of happiness’ suggested a good understanding of the focus of group pain programme on quality of life. He also suggested that pre-course written information should be available in different languages for those with difficulties reading English. SU2 described feeling heard and psychologically safe in his initial physiotherapy assessment:

“First of all, I was a bit nervous explaining how I feel but again the guy was really listening to me and that took the pressure down… I felt like it eased the pressure.” SU2

SU4 noted that in some services, language adaptations to written service information were common, but other adaptations were vital but missing:

“They are saying that we’ve got this leaflet, right, but I can’t read that leaflet. We’ve got it in 100 different languages, but well, it is not the language… I am blind, and they didn’t have it in an accessible format. They couldn’t give it to me in audio or email it to me so that I could listen to it with my computer. But they could offer it to me in Urdu, Punjabi, Gujarati a million different languages.” SU4

In terms of her group pain programme, SU4 described that she had been initially worried about how she would manage ‘it was a group of six. So it’s kind of like, am I just gonna start speaking over them, and people are just gonna think I’m rude’? but that the psychologist had talked openly and carefully about the adaptations that would help her feel comfortable, enabling her to make an informed decision.

SU1 chose not to participate in a group pain programme when invited because of her uncertain immigration status, describing ‘anxiety, uncertainty, worries about the future. That’s my main reason for not attending’. She hoped to attend in future and felt that clinicians had accepted her informed choice and had valued the individual input and communication with the physiotherapist that she continued to receive:

“For me personally, I can say they have done all they can for me. The physio and the staff have done all they can for me…. I don’t feel treated differently because I am Black.” SU1

In conclusion, in this theme, most service users described culturally grounded communication before the group pain programme as vital to helping them make informed decisions. This played out in complex, intersectional ways, relating to language, culture, age, disability and immigration status.

Pain service/GP recommendations

• (2) The Pain Service should develop further written or audio information about group pain programme options and the way that will work (a ‘handbook of happiness’). This should be made available in different languages and accessible formats.

• (3) The Pain Service should continue to run GP information and training sessions. This is to ensure that GPs are fully informed about group pain programme and can have informed referral discussions with service users.

• (4) GPs and Pain Service staff should encourage questions and reassure service users that their ideas, concerns and expectations are valuable and expected.

• (5) The Pain Service to ensure ongoing discussions about group pain programmes when service users are experiencing stressors related to ethnicity (e.g. immigration issues) to keep the ‘group pain programme door open’.

Feeling included

All four service users who decided to attend a group pain programme described feeling included as vital to their experience. Most accounts described ways the group facilitators had created a positive and open atmosphere tailoring the groups for individuals’ unique needs:

“The staff were approachable, the ladies were really personal and tried to understand you individually.”SU2

SU4 described practical adaptations the facilitator had made to the group pain programme to accommodate her visual impairment, such as describing pictoral images that would not be read by a screen reader and enhancing sensory details in visualisation exercises. SU4 described feeling that the group were supportive and she felt able to ask for more explanation where needed. This had a powerful impact on her self-management journey:

“The facilitator really included me in everything. It really made me feel good about myself because it didn’t make me feel like, oh here’s something else that I can’t fully participate in… I do think that making the adjustments helps on the clinical level as well… I remember at the time feeling really empowered and feeling like I understood my pain a lot more.” SU4

SU3 described being able to express a concern about the virtual format and the risk of being recorded, stemming from a difficult previous client experience in her professional role. Confidentiality in the group pain programme may have been particularly important for SU3 given her perceptions and experiences of mental and physical health stigma. The facilitator had been able to incorporate an in-depth discussion into the ground rules of the group, which helped SU3 feel more comfortable.

Several service users emphasised the importance of mixed ethnicity groups as allowing people to feel included and comfortable, enabling people to openly discuss their ethnicity and culture as part of a group pain programme. For example, for SU3:

“So if you could have a more of a diverse group, both in gender and, you know, background, I think that would help the people attending…. I know there are some people that had they come to the meeting, and they were the only minority person in the group, they would feel extremely uncomfortable and they…might not take benefit from it…When everyone is coming from different backgrounds and different experiences, you feel more comfortable because everybody’s different here…it will possibly put people at ease.” SU3

SU3 like others tended to speak in the second and third person (‘you’ and ‘they’) when discussing ideas for service improvement, perhaps reflecting a level of discomfort with appearing critical despite interviewers’ assurance that all feedback was welcome. No service user accounts mentioned having separate group pain programme for people of different ethnic backgrounds. Unfortunately, for SU5 who had actually been part of a mixed ethnicity group, this had not been enough to enable her to feel included. Her account suggested a sense of othering, relating to a lack of shared understanding about causes and impacts of pain:

“When I’m discussing with the rest of the team on the course I was the only one that wasn’t from the same community. Sometimes I don’t understand how they look at the pain, their perception…For instance, that guy who got a problem with his leg. I couldn’t understand. He tried to explain how it impacted his life, but I couldn’t pick up what the relationship was to the pain he feels. Even if he’s in pain there’s no physical reason he couldn’t do it. There’s a mental reason.” SU5

She felt that she couldn’t understand the emotional language around other service users’ suffering:

“I didn’t understand why they are suffering. For instance, if there is a physical problem and that that physical problem has healed why are you not back to normal then? These student to tried to explain and explain but because they use hard language I didn’t pick up that. Sometime when they communicate, the trainer as well, they use that language, similar terminology as them and I don’t understand.” SU5

This had unfortunately led her to feel she was excluded, ‘at the lowest end of communication in the list’ and whilst she felt facilitators had treated her equally in terms of chance to speak, she felt they had not picked up on her becoming withdrawn from the group pain programme:

“They could also improve that by paying more attention to people from ethnic minorities. If they keep quiet, it doesn’t necessarily mean that they understand.” SU5

At the time SU5 had decided not to continue on the group pain programme she cited work pressures and family commitments. This highlights difficulties some service users may experience in highlighting problems of ethnicity with predominantly White British staff members and asking for ‘further support to make sure I have understand well and get the best of it’. SU5 suggested more ethnic diversity amongst pain clinic staff would be beneficial as well as greater understanding of differing cultural meanings of pain:

“I think it could be better if there’s someone in the pain service team or staff who is from that ethnic group. First of all, that will open their mind and open their view to how we look at pain…. I think in NHS service is a wide spectrum of different people from different ethnic backgrounds. They could, even with a friend, speak to others ahead of the trainer to ask them if you were on that training what we could pay attention to. How do you look for the pain in your culture to make that training really successful and to make it make more sense.” SU5

Whilst having had more positive experiences of pain self-management, other service users also agreed that equality and diversity training to be vital for NHS professionals, particularly given the myriad of factors involved in a person’s unique ethnic and cultural (as well as other) barriers to quality healthcare. Service User 4 again provided a different perspective on adaptations needed suggesting the importance of acculturation factors:

“I think sometimes we look for things that aren’t there. We can look into this and say, “oh, let’s try and make sure that people are accommodated”. But.. I was born in England, and my parents have been in England since the 1960s. I don’t feel that pain or the services that I need are any different to somebody who is White British by descent.” SU4

Overall in this theme, there were diverse experiences and accounts from service users about whether and how their ethnicity and culture had played a role in feeling included in their group pain programme. Feeling included had a profound impact on the benefits they drew from their group pain programme and whether they chose to complete it. Their lived experience was that this was influenced both by the efforts facilitators made to explore barriers and offer individual adaptations and also by the ethnic diversity experienced in their group pain programme.

Pain service recommendations

• (6) Explore how group pain programmes could be more diverse in the demographics of attendees and openly prompt discussions around the impact of ethnicity and culture on pain and pain coping during groups.

• (7) Be sensitive that some service users may need extra support to get the best from group pain programmes, for example, exploring any concerns individually if they appear to be uncomfortable or withdrawn, knowing they may not come forward to ask for help.

• (8) Follow up with service users who choose not to attend to understand what may have contributed to this decision.

• (9) Consider how facilitator (staff) diversity can be increased, reflect on diversity within practice and supervision, and consider the impact of existing diversity and inclusion training.

• (10) To implement existing guidelines by also considering running group pain programmes in other language than English with the help of interpreters, though not the particular concern of our English-speaking service users in this evaluation.

Discussion

This service evaluation purposefully included service users identifying as being from a range of ethnic backgrounds, with experiences of starting, attending or declining their invite to attend a group pain programme. Their accounts varied in terms of whether and how ethnicity played a role in their pain service experience. They included narratives and dynamics not routinely explored in the service, leading to several recommendations for future group pain programmes.

Service users expressed that ethnicity and culture impacted on their understandings of pain. This included its validity for younger people and religious and socially prescribed coping mechanisms, which often did not fit with Western approaches to group pain programmes This fits with previous research on cultural pain coping and treatment decisions and whether people seek help ¹⁷ ; Green 2009. ¹⁶ Barriers discussed in help-seeking for both pain and emotional issues also reflect research exploring mental health stigma within ethnic minority groups^40,41 and disparities in the effectiveness of CBT. ⁴² Future studies might benefit from exploring how to combine the Western PMP approach with models of pain and its treatment from different cultural groups. ²⁶ For example, others have discussed how ‘science and prayer’ can be integrated in culturally adapted CBT programmes for those with Islamic faith. ⁴³

These factors influenced service users’ experience of communication around group pain programmes and their feelings of inclusion for those to take part. Several of these factors have been discussed in terms of barriers to use of health services more generally, ⁴⁴ but have been less often discussed in a pain self-management context. Yet ethnicity and culture were not seen as an important factors for all service users interviewed and research has reported that age and gender may more strongly influence views about pain management. ⁴⁵ Acculturation is a concept related to the degree to which an individual adopts the values, beliefs and culture of their host nation. ⁴⁶ This may partly explain why Service User 4, who described herself as second generation, did not find ethnicity to make a meaningful difference to her experience of the pain service. Research has identified that second and third-generation immigrants are more likely to share similar beliefs about pain to White British individuals relative to first-generation immigrants. ⁴⁷ Future service evaluations may wish to focus on first-generation immigrants such as Service User 5, who had so particularly felt her perspective of pain was different from the group members in her group pain programme. While this service evaluation focused on ethnicity, it became evident there was a need to consider an intersectional lens. Intersectionality draws attention to the need to simultaneously consider multiple axes of identity such as gender and ethnicity.^48,49 Similarly, the service users’ accounts discussed ethnicity in relation to various areas of identity such as disability, health literacy, faith (Muslim), age (younger) and gender (female), employment and so indirectly, socioeconomic status. Moving forward, it appears that adopting an intersectional perspective for service development ⁵⁰ would be beneficial for meeting the needs of service users from an ethnic minority group.

In terms of the second study aim, these themes related to 10 specific recommendations to be shared and implemented in our service, which may also be useful for other services. These aim to enhance the experience and effectiveness of group pain programmes for service users from ethnic minority groups. Peacock and Pate ⁴⁷ have recommended the development of culturally grounded pain management services, where understanding different cultural beliefs about pain and expectations for treatment can be incorporated into evidence-based pain management. This service evaluation has been able to elucidate what culturally grounded may look like for a group of our Service Users, with a focus on understanding their individual and intersectional needs, coproduction of health services and open discussion of cultural and religious beliefs as proposed by Unruh. ³⁰

Limitations and future work

This service evaluation offered insight into a diverse group of service users ‘ experiences of being invited for group pain programmes within a regional pain service. However, amongst several limitations, as this was a practical, unfunded service evaluation we relied on clinician recommendation for recruitment. Although informed about the purpose of the study, clinicians may have selected those they felt would be ‘good interviewees’ to recommend we contact, leading to exclusion of those who may have experienced multiple important barriers to share but clinicians may have felt reluctant to recommend.

We also focussed on the experiences of those previously invited to a group pain programme, others within the service are not offered a place either because they would need an interpreter (PMPs and CFT-PPs are currently delivered in English), or their multi-disciplinary clinicians judged (correctly or incorrectly) that they would not wish to take part. It is important to also gather their voices and perspectives. There may be further important adaptations that could be recommended to help a wider range of individuals living with chronic pain to engage with and benefit from group pain programmes, including those who do not speak English. Our audit of referrals to the physiotherapists and psychologists in the pain service had identified 4.5% of people as not speaking English. This is a substantial proportion of all referrals and future evaluations should ensure they are invited to be interviewed with the assistance of interpreters.

Further, this service evaluation only focused upon service users who had been referred to the physiotherapists and psychologists in the pain service. Future service evaluations and funded research studies should also include those service users who have only been offered medical assessment and treatment. It may be that they have different expectations and culturally grounded coping strategies to those who might have been referred for assessment for the group pain programmes. In addition, implicit or explicit bias in healthcare providers may have contributed to some people not being referred for group pain programmes. Therefore, it is important to ensure that their voice in included in all future service evaluation.

More broadly, whilst transferability is not the aim of IPA studies, we captured the voices of a small group of service users from one service only. There is a need for clinical and service-related research to more fully understand culturally grounded approaches to pain management and to develop practical applications to improve service access. This would be in line with wider public health efforts to address inequality and inequity in service access and utilisation. ²⁰

Conclusion

Research and guidelines have highlighted a lack of evidence surrounding the experience of people from diverse ethnic backgrounds.^6,26 This pragmatic, qualitative NHS service evaluation has found that the Service Users interviewed had unique perspectives on the way their ethnicity and culture shaped their experiences. According to our evaluation, culturally grounding group pain programmes starts with staff being mindful of the often hidden narratives, varied understandings and power dynamics in pain. Following this, rather than ‘one-size fits all cultural adaption’, coproduction with ethnic minority service users is needed with open, safe lines of communication within NHS pain services for people to openly share their perceptions, experiences and expectations from group pain programmes. These are vital to offering an inclusive, positive experience for all.

Appendix 1. Interview topic guide

• 1. Tell me a little bit about your experience of living with pain?

• 2. How, if at all, do you feel your ethnicity and culture affect that experience?

  • Prompts: How, if at all, does your ethnicity and culture affect the support you need for your pain?
• 3. I think you attended………….assessment/group, what did you think of this?

  • Prompts: Explore the experience with the physiotherapist and psychologist, assessment or group. Explore what the expectations were or if they were met. What was done well? What could have been better? How could you experience have been made better?

• 4. What role, if any, did your ethnicity and culture play in your experience of the pain service?

• 5. What stopped you/made you access the group?

• 6. How, if at all, could your ethnic and cultural needs have been better supported?

ORCID iD

Zoey Malpus https://orcid.org/0000-0001-6319-5931