Abstract
Purpose: Health care disparities exist for people from culturally and linguistically diverse (CALD) communities. Addressing the cultural competence of health care providers could limit these disparities. The aim of this study was to improve cultural knowledge of and humility regarding pain in a CALD community. Method: This interpretive description qualitative study used focus group discussions (FGDs) to generate ideas about how South Asian culture could influence how health care providers manage pain. A total of 14 people with pain and of South Asian background (6 women and 8 men, aged 28–70 y) participated. Two investigators independently analyzed the data. This process involved repeatedly reading the transcripts, then manually sorting the key messages into categories. The investigators compared their categorizations and resolved differences through discussion. Next, similar categories and concepts were grouped into ideas (potential themes). These ideas, along with supporting categories and verbatim quotes, were presented to the full research team for feedback. After compiling the feedback, the ideas formed the thematic representation of the data. Results: The data from the FGDs revealed how pain management could be culturally adapted. The FGDs generated four themes about South Asian cultural perspectives that could influence the pain management experience for people living with pain: (1) cultural and linguistic impediments to communication, (2) understanding of pain in terms of the extent to which it interferes with function and work, (3) nurturing or personal attention as a marker of good care, and (4) value attributed to traditional ideas of illness and treatment. Conclusion: This study demonstrates how engaging with CALD people living with pain can lead to improved cultural knowledge and humility that can form the basis for adapting pain management. Through this process, it is more likely that a meaningful and client-centred pain management plan can be developed.
Key Words: cultural competency, culture, pain management, physical therapy specialty, qualitative research
Abstract
Objectif : les membres de communautés linguistiques et culturelles diversifiées (CLCD) font face à des disparités en matière de soins. Si les dispensateurs de soins acquéraient des compétences culturelles, il serait possible d’atténuer ces disparités. La présente étude visait à améliorer les connaissances et l’humilité culturelle au sujet de la douleur dans les CLCD. Méthodologie : étude qualitative descriptive et interprétative faisant appel à des entrevues de groupe pour générer des idées sur la manière dont la culture sud-asiatique peut influencer les modes de gestion de la douleur par les dispensateurs de soins. Au total, 14 personnes d’origine sud-asiatique qui souffrent de douleur y ont participé (six femmes et huit hommes de 28 à 70 ans). Deux chercheurs ont analysé les données de manière indépendante. Ce processus incluait la lecture répétée des comptes rendus, puis la catégorisation manuelle des principaux messages. Les chercheurs ont comparé les catégories et résolu leurs différends par des discussions. Ils ont ensuite regroupé les catégories et les concepts semblables en idées (thèmes potentiels). Les idées, de même que les catégories et les citations textuelles qui les appuyaient, ont ensuite été présentées à l’ensemble de l’équipe de recherche pour qu’elle y réagisse. Une fois les réactions compilées, les idées ont formé la représentation thématique des données. Résultats : les données tirées des entrevues de groupe ont révélé des manières d’adapter la gestion de la douleur à la culture. Les entrevues ont produit quatre thèmes sur les points de vue de la culture sud-asiatique qui pourraient influer sur l’expérience de gestion de la douleur des personnes qui vivent avec la douleur : 1) les obstacles culturels et linguistiques à la communication, 2) la compréhension de l’importance de l’entrave que représente la douleur pour le fonctionnement et le travail, 3) l’accompagnement ou l’attention personnelle comme marqueur de bons soins et 4) la valeur attribuée aux idées traditionnelles de la maladie et du traitement. Conclusion : la présente étude démontre que le fait d’engager un dialogue avec des personnes de CLCD qui vivent avec la douleur peut améliorer les connaissances et l’humilité culturelles sur lesquelles reposeront les mesures d’adaptation. Grâce à ce processus, il est plus probable d’établir un plan concret de gestion de la douleur, axé sur le client.
Mots-clés : : compétence culturelle, culture, gestion de la douleur, recherche qualitative, spécialité de la physiothérapie
The bio-psychosocial perspective on health includes biological, psychological, and social factors that interact to generate a comprehensive view of health and illness rather than the traditional biological one.1 For example, studies of experimental pain (pain evoked in a laboratory setting) clearly demonstrate that responses to noxious stimuli depend on ethnic and cultural background.2 However, physiotherapists and other health care providers tend to approach pain primarily on the basis of biology and are less adept at integrating a bio-psychosocial perspective, particularly the cultural aspects of pain, into their pain management plan.3
Culture is defined as a set of learned behaviours, beliefs, attitudes, and ideals that are characteristic of a particular society or population,4 and it has a substantial impact on health behaviour, including illness behaviours, help seeking, and receptivity to medical interventions.5 Torres-Cueco stated that chronic pain cannot be understood, and therefore effectively managed, without regard to its social and cultural aspects, such as the role of the family, social structures, and religious beliefs.6 People from culturally and linguistically diverse (CALD) communities have higher levels of pain, disability, and psychological distress when they live in a Western environment.7 These adverse outcomes are in part due to the less-than-adequate pain treatment that they receive.8
Explanations proposed for this inequality include a lack of cultural sensitivity or awareness on the part of the provider, language barriers, and the patients’ socioeconomic status.9,10 For example, physiotherapists and other health care providers can have negative views of working with health care interpreter services.11,12 To address these negative views or lack of awareness, authors have recommended that health care providers participate in cultural awareness training and learn how to apply the bio-psychosocial model of care.13,14 Recent recommendations for core competencies in pain management have also highlighted that a lack of cultural humility among health care providers is a barrier to effectively managing their patients’ pain.15
Thus, a clear need exists for clinicians to improve their cultural humility so that they can successfully adapt pain management so that CALD communities can achieve a culturally safe health care environment. Cultural humility with respect to pain management requires reflecting on one’s biases, values, and cultural assumptions and being willing to relinquish the role of expert to learn from people living with pain, thereby creating a health care environment that is built on open and respectful communication and acknowledges disparities within the health care system.16
Campinha-Bacote proposed a model for operationalizing cultural competence that consists of five constructs:17 (1) cultural awareness (the capacity to reflect on one’s own cultural background and recognize biases and assumptions); (2) cultural knowledge (seeking information about diverse cultural groups); (3) cultural skill (the ability to apply knowledge in a culturally competent manner); (4) cultural encounters (directly engaging in cross-cultural encounters); and (5) cultural desire (the intrinsic motivation to engage in the previous four components). This model is also relevant to supporting cultural humility if one takes into account that humility involves a clear shift from competence to accountability.18 This process of building knowledge and accountability can create a framework for effectively culturally adapting an intervention: it should include a “systematic modification of an evidence-based intervention to consider language, culture, and context in such a way that it is compatible with the individual’s cultural patterns, meanings, and values.”19(p. 362)
The aim of this study was to improve cultural humility by enhancing cultural knowledge about pain management. Focus group discussions (FGDs) were conducted with people from a CALD community (South Asian Canadians) to generate first-person perspectives on how their culture influenced their perspectives on pain management.
Methods
Reflexivity
Our research team consisted of physiotherapists working in academic and clinical settings, with and without a South Asian cultural background. Part of the impetus for this study was our reflections on the clinical challenges faced by therapists in managing pain among people from different cultural backgrounds. Our starting assumption was that a lack of cultural knowledge contributes to challenges in finding common ground on the meaning of pain; therefore, we wanted to discover how to appropriately interpret pain experiences in people from CALD communities.
Participants
Eligible participants were those who identified as having South Asian background, who self-reported a good understanding of their cultural background, and who were willing to discuss their personal experiences with pain. They were purposively recruited to include varied ages, both men and women, and both first- and second-generation South Asian Canadians. Participants were recruited from a Hindu community centre in Edmonton, Alberta, and a post-secondary programme for internationally educated physiotherapists. The University of Alberta Health Research Ethics Board approved this study (Pro00056921) on May 4, 2014, and informed consent was obtained from all participants.
Design
This qualitative study followed the interpretive description methodological orientation, which is a qualitative approach designed for applied clinical fields.20 Interpretive description draws on principles from traditional social science qualitative methodology and applies them to the naturalistic conditions of clinical fields such as nursing and physiotherapy.21 It aims to understand the meanings of clinical phenomena by providing a clear description of them, articulated through themes that account for individual perspectives and variations.22
Data collection
From June 2016 to February 2017, we recruited 14 individuals. All identified as Hindu South Asians. They were divided into three FGDs. FGD 1 consisted of two women and three men aged 30–70 years; FGD 2, of two women and three men aged 28–35 years; and FGD 3, of two women and two men aged 18–62 years. The FGDs were facilitated by two members of the study team: the principal investigator (GPB), who had experience in qualitative research, and a clinician of South Asian background (AS), who translated for those whose second language was English.
The facilitator (GPB) asked a series of questions intended to trigger discussion from a tailored discussion guide prepared by the research team (see Appendix 1 online) and recorded field notes. The discussion guide consisted of probing questions about the link among South Asian culture, pain experiences, and how health care providers should understand these experiences. FGDs were digitally recorded and professionally transcribed verbatim. On the basis of a review of the field notes and the transcribed discussion of FGD 1, the discussion guide for the subsequent FGDs was modified by including additional probing questions.
Analysis
Consistent with interpretive description, we collected and analyzed the data concurrently, in an iterative fashion. One researcher (GPB) conducted this preliminary and iterative analysis. When we finished collecting the data, two investigators (GPB and RT) independently conducted a content analysis. This process involved reading the transcripts repeatedly, then manually sorting the key messages into categories. We compared their categorizations and resolved any differences through discussion. Next, the principal investigator analyzed the categories and grouped similar concepts into ideas (potential themes). These ideas, along with supporting categories and verbatim quotes, were presented to the full research team for feedback. After compiling the feedback, the ideas were modified and presented to the research team until no additional suggestions were made. These ideas then formed the thematic representation of the data.
Results
The FGDs focused on South Asian cultural perspectives that could influence the pain assessment experience of people living with pain. Although the facilitators initially directed the discussions toward pain assessment, many participants chose to integrate aspects of their treatment experiences into the discourse. As a result, we integrated these data into four themes that related to both assessment and treatment: (1) cultural and linguistic impediments to communication, (2) understanding of pain in terms of the extent that it interferes with function and work, (3) nurturing or personal attention as a marker of good care, and (4) value attributed to traditional ideas of illness and treatment. Each theme is defined and supported with verbatim quotes from the participants. (Refer to Appendix 2 online for the complete set of quotes for each theme.)
Theme 1: cultural and linguistic impediments to communication
In addition to communication barriers between people with different abilities in speaking and understanding English, communicating one’s pain experiences exacerbates the challenge. There is no universal language for pain. Pain is a personal and idiosyncratic experience, and people often use metaphors to explain their experience. Pain metaphors and pain descriptors often have different meanings, depending on culture and experience. One participant described the challenge of translating a pain descriptor from his first language into a meaningful expression in his second language, English:
I think describing pain, like someone just said earlier, is, is not an easy task for an Indian. It’s – they – they kind of sometimes describe it in a – in a kind of a non-understanding way, like you know so – so for instance like my body’s on fire. … Sometimes like there is no proper words. (FGD 1)
Participants also expressed challenges with common Western procedures for measuring pain, such as the 0–10 numeric pain rating scale. This quote describes the challenge of relating changes in pain intensity over time in a discrete numerical way:
Like they won’t be able to differentiate between soreness or pain and severity of it. For them pain, pain is there, that’s it. So they won’t be able to tell whether it’s better than last time, or it’s worse than today, or whatever it is, like it’s just same is there, pain is there. (FGD 2)
Communication and linguistic barriers are not limited to people of South Asian background, and they can negatively influence all forms of health communication. However, our findings show that such negative effects can be especially pronounced for pain because the fundamental problem cannot be seen, heard, or grasped if the person is unable to express it in words or metaphors. Cultural differences can lead CALD people with pain to use metaphors that a health care provider does not understand. This miscommunication can result in a pain assessment that focuses on understanding the description of pain rather than the impact of pain.
Theme 2: understanding of pain in terms of the extent to which it interferes with function and work
Related to the challenges of communicating pain descriptors and intensity, participants also commented on how best to communicate the nature of their pain. Participants consistently reported that, rather than assessing pain intensity on its own, function and work should be used as a touchstone for understanding their pain.
Yeah I think Indian people when they have pain, if it’s disabling and then that’s pain. If you’re able to continue with your day-to-day work and accomplish your tasks, then you can still work, then that’s manageable pain, and then you can say there’s no pain because you can still achieve what you want to achieve. (FGD 2)
The participants thought that the assessment of pain on the basis of the numeric pain intensity rating scale was not meaningful. For a physiotherapist to understand the impact of pain, the intensity of the pain should be discussed as it relates to work inside or outside the home. Although the assessment of pain intensity remains a valuable measure of prognosis, a South Asian interviewee more easily understands it when it is related to function. The participants suggested that health care providers could modify a question about the intensity of pain to the following: “How does your pain limit the number of stairs you can walk up before you need to stop?”
Theme 3: nurturing or personal attention as a marker of good care
The participants described South Asian culture as nurturing and supportive. As this quote illustrates, people of South Asian background tend to rally around those in their community who are injured or ill:
Whereas in the Indian culture you may get the whole village that comes and – and is supportive, so you may get your neighbours and your other family sort of, you know, cooking and providing for – you know for your needs. So it’s not like, like in the Western world, you know there could be a death in one house but your neighbours may not be kind of aware or be involved. (FGD 3)
In a health encounter, people tend to expect to be treated in the same way as they treat others. Thus, if one comes from a nurturing background, one might expect to be similarly nurtured when ill. A desire for passive treatment is often viewed negatively in Western medicine (e.g., passive coping). However, among those who consider nurturing a good marker of care, a preference for passive treatment may simply reflect the values one has about caring for people with pain. Thus, although a physiotherapist’s perspective of good care may prioritize promoting independence and autonomy, South Asian people living with pain may consider feeling nurtured as good care. For example, one participant recalled an experience about being asked to exercise independently and viewed it as being less effective than exercising in a gym with a physiotherapist, who could provide reassurance and encouragement.
Theme 4: value attributed to traditional ideas of illness and treatment
Principles of Western medicine tend to revolve around the biomedical model, in which abnormal physiology or anatomy account for one’s pain experience. This approach to medicine is highly valued in Canadian culture, including among our study participants. However, there was also value attributed to traditional ideas of illness and treatment, particularly among elders:
Now us Indians would believe oh well you should have more garlic because you’ve got a, b, and c ailments because this is kind of an anti-inflammatory, and this – and – and you know garlic or ginger does this to you. You know if you get joint pains you should alter your diet accordingly. So I think a sort of awareness of those kind of things would definitely help. (FGD 3)
Participants discussed having a deep respect for elders’ opinions about illness and health and said that many people of South Asian background would be willing to try traditional remedies for pain management. When physiotherapists assess their patients’ treatment preferences and propose interventions, integrating traditional ideas about wellness into Western medicine values may enhance the likelihood that the patients will engage in these interventions.
Discussion
Following Campinha-Bacote’s17 model, in this study we endeavoured to enhance cultural humility through self-reflection and build cultural knowledge by learning how culture influences pain management from the perspectives of people of South Asian background. Four themes emerged from the participants’ perspectives on how physiotherapists and other health care providers might view the management of pain through the lens of a person of South Asian cultural background. Some of these data likely apply to any culture. For example, the importance of overcoming cultural and linguistic impediments to communication and the value attributed to traditional values and norms of health are likely relevant for most CALD communities. In a systematic review that evaluated the effectiveness of culturally tailored interventions among Chinese Americans, those interventions included providing linguistically appropriate messages and incorporating Chinese cultural values and norms.23
The participants in our study also shared information that may represent a more nuanced perspective of pain by people of South Asian background. They said that using work in and outside the home as a touchstone for pain intensity was important and that nurturing behaviours displayed by health care providers were a marker of quality care. Because a lack of cultural awareness is a potential reason for care disparities in CALD people with pain,8–12 this study revealed a process for building cultural knowledge through collaboration with CALD people that could support a more culturally informed approach to assessing pain. This more informed perspective should contribute to improved clinical outcomes in CALD groups seeking physiotherapy services.
As stated in the “Reflexivity” section, part of the impetus for our study was the perception that culturally naïve physiotherapists are not attuned to understanding the pain experience of someone from a different culture. This perception may come from a cultural competence point of view, whereby an “outsider” must seek expertise from another culture to more effectively deliver care. Because outsiders can never truly know what it is like to be part of another culture, it is unlikely that they will ever become culturally competent.24 The findings from our study, in which the expertise lay with people of South Asian background, highlight a process in which therapists can express cultural humility, thereby improving their cultural knowledge and shared understanding of pain. Our participants used their personal experience to provide tangible recommendations for physiotherapists that might help them to better understand the pain experience of people of South Asian background. Examples from the data included using work as a touchstone for pain intensity and that without the context of work, the pain intensity numeric rating scale was not useful as a linear measure of progress.
Elements of published culturally adapted interventions are similar to the ideas generated by the research participants. For example, the participants in our study emphasized the importance of overcoming cultural and linguistic impediments to communication. Similarly, Brady and colleagues addressed this issue by providing translated materials, involving multicultural health workers, and using culturally appropriate metaphors.25 In another culturally adapted physiotherapy pain programme for people of Pakistani background, Shoiab and colleagues created audio and video recordings of key messages about the pain management programme translated into Urdu.26 Their research participants also identified the importance of their culture in interpreting pain – for example, using work inside and outside the home as a touchstone for pain intensity. A recent study also suggests that regardless of cultural background, the importance of linking pain and function is helpful in defining high-impact chronic pain.27 In addition, the research participants emphasized that in their culture nurturing is a marker of quality care and that traditional cultural approaches to pain management were important.
Although Brady and colleagues’25 study involved individuals from different CALD communities than this study, their culturally adapted intervention reflected similar themes. For example, their participants emphasized the fact that interventions such as setting goals were rooted in fulfilling traditional cultural roles and that it was important for health care providers to connect with community supports to learn about traditional approaches to managing pain. Shoiab and colleagues also consulted a Muslim chaplain to learn how Islamic teachings promoted self-management, compassion, and physical activity and to dispel cultural myths.26
The literature on the importance of, and process for, culturally adapting interventions is growing, but there is a relative dearth of information about the outcomes associated with improved cultural humility among health care providers. In a review summarizing the evidence for improving cultural humility to reduce health care disparities, much of the evidence related to the effect on the health care providers’ attitudes.28 Similarly, in the systematic review by Huang and Garcia,23 the effect of culturally adapted interventions for Chinese Americans was primarily limited to metrics of satisfaction and engagement with culturally adapted interventions.
However, recent literature is beginning to fill this gap by advocating for collaboration between health care providers and cultural leaders to enhance health outcomes in CALD groups. For example, a pain management physiotherapy programme was culturally adapted to assess the impact on patient engagement and clinical outcomes.25 Researchers worked with CALD community leaders to identify the ethnocultural values of the communities involved. The resulting intervention included the following elements: the programme was delivered in collaboration with multicultural health workers; it was offered in the participants’ native language; and it used culturally relevant metaphors and case studies. This exploratory work revealed higher levels of adherence and attendance and reduced pain-related suffering among the participants.25 Identifying the effective elements of culturally adapted interventions is an important next step in improving the quality of care offered to CALD people living with pain.
Our study had several limitations. The first relates to the idiosyncratic nature of pain and the substantial diversity of our society; it may not be appropriate to attempt to generalize cultural perspectives on pain to other cultural groups that may hold different values and beliefs. Thus, our small sample size suggests that we need to be cautious in applying our findings more broadly. Readers are instead encouraged to apply the process of collaborating with people living with pain and cultural leaders to enhance cultural knowledge and develop culturally adapted pain assessment and management programmes, rather than attempting to generalize these findings to all people of South Asian background. The literature similarly emphasizes the importance of using qualitative methods to capture important contextual factors that are not easily assessed in large quantitative studies.29
The second limitation relates to qualitative research in general. As with all such research, our perspectives could have influenced the data provided by our participants and how we interpreted them. To mitigate this possibility, two researchers were involved in each FGD – one male and Caucasian and the other female and South Asian. We also conducted peer debriefing with the entire research team and offered our participants the opportunity to provide feedback on our conclusions. (None was given.) However, it is important to acknowledge that the study’s findings could have differed if it been conducted by researchers with differing perspectives. Finally, descriptive information about the participants’ current pain and history of pain was not collected. Their past experiences with pain may have influenced the manner in which they engaged in their FGD, and if we had collected that information, it may have influenced our analysis of their data.
Conclusion
This study supports the growing literature on incorporating first-person perspectives into culturally adapted health care interventions. The process we used was informed by a model that can develop cultural humility, and our study yielded findings similar to those of other studies that have developed culturally adapted interventions.25,26 For example, addressing cultural and linguistic impediments to communication and incorporating relevant cultural values and beliefs into interventions are likely common to any culturally adapted intervention. Although specific elements of a culturally adapted intervention may differ in other contexts, the process described in this study could be followed to engage cultural leaders in developing an appropriately adapted approach to care. The importance of adapting interventions to better meet the needs of CALD groups is well supported, but more research is needed to understand the resources required to effectively implement these interventions, analyze the magnitude of their effect, and determine which elements are most influential on outcome.
Key Messages
What is already known on this topic
The literature advocates for collaborating with people from culturally and linguistically diverse (CALD) communities who live with pain about how to best adapt assessment strategies, interventions, or both to better support marginalized groups. The elements of culturally adapted interventions are emerging but are relatively untested.
What this study adds
This study adds to a developing body of literature on giving people from CALD communities the opportunity to provide first-person perspectives on the culturally appropriate elements required to adapt Western pain management practices to meet their needs. This process is more likely to develop a meaningful and client-centred pain management plan for them.
Supplementary Material
References
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