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Qualitative research on pain

Mitchell, Laura A; MacDonald, Raymond AR

Current Opinion in Supportive and Palliative Care: June 2009 - Volume 3 - Issue 2 - p 131–135
doi: 10.1097/SPC.0b013e32832b7de2
Pain: nonmalignant disease: Edited by Richard Langford

Purpose of review This review brings together developments over the past year in pain research using qualitative methodologies. In line with the goals of the current biopsychosocial model of pain, such a research framework offers in-depth understanding of the experience of pain within its cultural, familial and socioeconomic environmental context.

Recent findings Using ‘qualitative’ and ‘pain’ as title and keyword Medline and CSA database searches, the pain literature revealed four main areas where qualitative studies have contributed significantly to knowledge development. These are: general chronic pain care: perspectives of patients and practitioners; pain experience across the lifespan; psychosocial aspects of back pain; and experience of underresearched conditions.

Summary The detailed insight into subjective experiences of the pain sufferer or healthcare provider offered by qualitative research can make important contributions to evaluating and improving practice and also in theory development.

Glasgow Caledonian University, City Campus, Glasgow, UK

Correspondence to Dr Laura A. Mitchell, Division of Psychology, Glasgow Caledonian University, Cowcaddens Road, Glasgow G4 0BA, UK Tel: +44 141 331 8562; e-mail:

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Qualitative methodology is increasingly recognized as a valuable means of investigation within pain research. Through close analysis of the narratives of a small number of individuals experiencing a highly complex phenomenon such as pain, a mapping of interacting factors or a highly detailed examination of a particular issue may offer a multifaceted understanding of the biopsychosocial dimensions of pain [1]. This growing recognition of qualitative methodologies within the study of pain is in keeping with developments across all areas of medical and related research where qualitative methodologies are now firmly established as a reliable approach to gaining new insights in response to specific research questions. Qualitative approaches appear particularly pertinent to pain research where it has long been established that there are considerable individual differences in relation to subjective experiences of pain. Importantly, these subjective experiences can have significant effects upon a range of psychological variables such as depression, self-efficacy and locus of control. Therefore, research that focuses primarily upon subjective experiences of pain can contribute to the growing body of knowledge that seeks to understand the multifarious and complex ways in which pain is experienced in both clinical and nonclinical contexts.

There are now a significant number of discrete methodologies and analytical strategies that can be categorized under the heading ‘qualitative’, including discourse analysis [2], grounded theory [3], and interpretative phenomenological analysis [4]. It is beyond the scope of this paper to review all these techniques, but is important that each of these approaches has its own well defined and clearly articulated guidelines which, if adhered to, produce robust findings from which clear conclusion can be drawn in line with the epistemological priorities of qualitative enquiry. It is also our contention that all the earlier-mentioned approaches can fruitfully be employed within pain research if the research questions are appropriately developed and delineated.

The following sections highlight a number of recent studies that utilize qualitative methods to investigate experience of pain.

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General chronic pain care: perspectives of patients and practitioners

Insight into pain care from the perspective of the practitioner has been acquired in a variety of contexts. The care of chronic pain patients from the viewpoint of district nurses was examined using a grounded theory analysis of focus group interviews [5•]. This approach [3] aims towards development of fully contextualized theory in unexplored areas, through systematic examination of interview transcripts for emerging themes. Importantly, sample size in this methodology is not preplanned but finalized when ‘saturation’ of themes occurs and no new ideas emerge. Key findings from the study include frustrated ability to actively manage patients' pain due to communication problems and training and support issues with their organizations.

Grounded theory formed the methodological basis for a study investigating the experience of general practitioners' (GPs') treatment of chronic pain in a South Asian community in England [6•]. Key concerns for the GPs were the manner in which patients present with their pain. Self-management skills and adherence to medication regime were identified as difficult to address in communication with patients, as was discussion of psychological factors in the pain experience, which GPs admitted to avoiding when fearful of disturbing the doctor–patient relationship.

In many cases qualitative and quantitative methodologies can be utilized together to offer a more holistic view of a particular research issue. For example, little has been reported from the perspective of surgical nurses of patient controlled analgesia, despite their crucial role in the implementation of such techniques, and in this study a mixed methods approach [7] used thematic analysis of semistructured interviews to aid the development of a large-scale survey questionnaire. Thematic analysis, the system of identifying, analyzing and reporting themes in data [8] is an elementary technique underpinning many qualitative methodologies such as grounded theory. In this study, both enthusiasm and reservations were uncovered as PCA was reported as having a significant yet complex impact on workload, both reducing it in some ways and adding to it in others. Nurses concurred that improvement of care was achieved through the ready accessibility of pain relief to the patient, yet targets for frequency of observation were viewed as potentially unrealistic when placed within rest of workload. Nurses also reported reservations with prescription of PCA for certain patient groups, highlighting problems in elderly or confused individuals.

Two studies within this review period have investigated the lived experience of chronic pain from the perspective of previously underresearched patient groups. Although qualitative research involving registered pain clinic users has yielded important findings on social responses to pain such as feelings of loss, bereavement and stigma [9] and frustration and anger [10], the experiences of ‘nonservice users’ who have not registered for help has not been investigated. In order to uncover motivational issues influencing the seeking out of healthcare provision, a study [11••] of nine women and three men used thematic analysis to map emergent themes. These were found to include the dependence and social withdrawal which occurs when heavy reliance on others altered both the social and work role of the individual, potentially leading to greater isolation. Participants further discussed their daily struggle to appear ‘normal’, and those who did appear to manage their pain successfully were observed to view it as a separate, coexisting entity to them. Particular attention was drawn from the findings to individuals with chronic pain who wish to increase their self-management and empowerment over pain, but feel unsure of how to go about this and occasionally frustrated in their attempts by healthcare services. It is important to note that qualitative methodologies allow key issue to emerge from the data rather than be imposed upon the experimental design in the form of dependent and independent variables. This approach can facilitate the development of ideas and themes that the researchers had not considered prior to the study. In this sense qualitative research in not concerned with the testing of a specific set of hypotheses.

The everyday management strategies of chronic neuropathic pain sufferers was investigated in a second study [12] to thematically analyse focus group narratives. The use of conventional medicine, although the most frequently used strategy, was associated with unpleasant side effects by these patients, whereas complementary medicine had been experienced as ineffective. The treatment histories often revealed an exhaustion of options and difficulty in gaining acceptance and adjustment to pain while overcoming a lack of continued energy to fight symptoms. Some success was reported through the use of distracting mind–body rest techniques.

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Pain experience across the lifespan

Three papers in the review period have built upon previous qualitative findings of pain experience across the lifespan. In older people with chronic pain, previous studies investigated the disruption of social life and subsequent isolation of neuropathic pain sufferers and their spouses [13], yet revealed perseverance through physical and mental activities in order to lead as meaningful a life as possible [14]. The most recent work, however [15•], utilized thematic analysis in parallel to a randomized controlled trial in order to investigate older people's preferences and decision making process on medication for knee pain. Analysis of experiences and expectations of topical or oral NSAIDs of 30 patients from practices over the United Kingdom showed medication preference to be most influenced by whether pain was experienced as constant or transient, whereas risks associated with drug type and practicality of use also played an important role.

A neglect of research into parents experiencing chronic pain and the effects on their family led to a study of 16 mothers and their children between the ages of 6–12 [16•]. Thematic analysis revealed pain to play a significant role in family life, with most children being aware of their mother's ill-health even when presumed by parents to be unaware. Positive outcomes despite daily challenges were proposed to be increased helping behaviour and consequent sense of responsibility and independence in the children, as well as the potential for children to develop better stress relief and coping strategies than peers. The possibility of negative effects on children such as increased vigilance to their own pain and reinforcement of illness behaviour, however, were discussed. For the mothers in the study, appreciation of ability rather than focus on disability was important, as was empowerment through learning and researching their condition. The social burden of pain and the feeling of ‘missing out’ across various facets of life such as career, travel and family activities was identified as a theme, as was the draining effect of pain on physical and emotional health. The authors conclude from their analysis that almost every aspect of life was affected by pain in these dyads, but the effect on children was mixed and not solely one of suffering.

The experiences of children suffering themselves from chronic pain were investigated in a study [17] aiming to increase understanding of the role of the healthcare professional in assisting children to cope with and manage pain. Data from semi-structured interviews with five children were found to focus firstly on the salience of previous experiences with healthcare provision in influencing current pain response. Recurrent unsuccessful consultations were found to make children question if their pain would ever be resolved, leading to a lowering of expectations and the potential for a more guarded approach to interaction. Also relating to such interaction, the feeling of being disbelieved and misunderstood was found to be a major barrier to communication, as was the feeling of being dismissed when referred on to other specialists. Interactions were secondly suggested to influence pain perception itself, with lack of explanation for their illness leading to fear in children that pain would not go away and may be caused by an underlying serious condition. Overall, this study suggested health professionals do influence the perception of pain in children, and encouragement of active listening may be beneficial.

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Back pain

Qualitative research has provided particular insight into the multidimensional experience of back pain, with recent studies investigating, for example, the perceived barriers to both return to work and engagement with rehabilitation [18], and the possible influence of expectations on response to pain care [19]. Three most recent studies have continued to investigate the perspective of patients on certain elements of their care. The importance of patient-centred care within the practice of physiotherapy, firstly, is clearly reinforced in policy and healthcare literature. What this potentially complex term means to the patient, however, was recognized as poorly understood in one study [20••]. In order to aid development of the model with patient input, 25 individuals from physiotherapy departments across Scotland were interviewed. Six main themes were found to summarize responses, with that of communication underpinning the entire process. Importance of making patients feel involved in care was flagged up, throughout the decision-making process and through information sharing to the best of ability even when diagnosis is unclear. The benefits of individually tailored treatment was a clear theme among participants which highlighted a lack of satisfaction with group rehabilitation, that in some cases had led to disengagement. Although personality and competence were factors influencing interaction with the physiotherapist, this was recognized as not necessarily resulting in patient-centred care.

The most effective ways to provide advice to chronic low back pain patients were investigated in a further study of three focus groups of patients between 41–55 years who had received advice and exercise as part of treatment [21]. Overall, the complexity of managing the condition became clear, with individual tailoring of treatment paired with support and understanding of the practitioner seen as best approach to care. Despite the negative emotional responses to pain highlighted by participants, the awareness of how to manage symptoms which would develop over time with this ideal care leads to greater proactivity and positivity.

Such interaction between feelings of hope and despair was investigated specifically in a study of the beliefs of nonspecific low back pain patients [22]. Participants were interviewed on their own back pain ‘story’, which were then thematically analysed with the aim of informing new conceptual frameworks for understanding consequences of back pain. Overarching themes to emerge were the impact on ‘self’ of the nonspecific diagnosis, which was viewed as creating uncertainty and impeding closure. The social, cultural and occupational contexts of the individual were found to influence beliefs and expectations, with a lack of options and autonomy in the workplace potentially leading to a sense of hopelessness. Speculation as to the future and fear of perceived inevitability of the problem getting worse challenged patients' ability to cope throughout the course of the problem. The authors of the study call for consideration of psychosocial issues and attention to patients' understanding of their condition throughout consultation.

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Experience of specific conditions

Qualitative methodology has formed the basis of three papers investigating subjective experiences of previously underresearched conditions. The phenomenon of what appear to be neurological neglect-type symptoms towards a limb as part of complex regional pain syndrome was explored [23] using a grounded theory analysis of the narrative of 27 patients. Participants reported a desire to amputate the limb, and experienced a mismatch between the sensation of the limb and its appearance, with areas of the limb possibly erased in individuals' mental representations. Findings led the authors to conclude that ‘body perception disturbance’ is the most accurate term for this phenomenon.

In order to understand health-related quality of life in patients with inflammatory bowel disease (IBD) and to establish the representativeness of current measures, a study [24••] analysed detailed descriptions of 282 patients of how IBD affects their daily activities. The themes of these subjective experiences were then compared with the most frequently used current measurement scales, the SF-36 [25] and the IBDQ [26]. Issues such as effect on physical functioning, emotional health and social participation were highlighted, however, pertinent issues of cognitive effects, self-regulation and practical issues emerged which are not included in current measures. The authors call for revised measurement tools to investigate effects on cognitive functioning such as reduced motivation and alertness due to decreased mental resources, self-regulation in everyday life such as planning behaviour to regain control over health, and practical issues such as work and finances and their implications for health. The use of qualitative methodology in this study is suggested by the authors to allow definition by the patient of their own experience without being primed to identify issues as ‘problems’.

The benefits of metasynthesis of qualitative studies in order to develop insight into an issue were explored in a paper in relation to experience of fibromyalgia (FMS) [27••]. Although synthesis of studies is recognized as potentially beneficial in creating a whole greater than the sum of parts [28], fundamental requirements of qualitative research mean that divergence, as well as similarity, must be fully recognized [29] and account taken of the many approaches that come under the qualitative heading. In this study, 23 studies totalling 383 patient narratives revealed various overarching themes. The dualities of pain in FMS were frequently reported in relation to being either specific in location, or diffuse and shifting, as well as being both constant and varying. Of particular importance was the collective effect of many small individual symptoms. Describing pain in a clear and accurate manner was revealed as a problem, as was the fight for ‘legitimacy’ of having an illness where clear, outward signs may not be present. The theme of diagnosis revealed the difficulty of the prediagnosis period where fear of underlying malignant conditions may arise, yet diagnosis itself was often not a resolution, as uncertainty about the future and the search for effective treatment remained. Overall, this study concludes that the intangible, ambiguous and invisible nature of FMS makes it a particular challenge for patients and healthcare providers.

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Qualitative methodologies can be seen in recent research to offer a valuable depth of understanding of the perception and experiences of both patients and clinicians, offering insight into the potential facilitators and barriers to good pain management. To theoretical understanding of pain, qualitative research can offer theory or model building in underresearched areas. A key issue here is to view qualitative work as complementary, rather than in opposition, to quantitative methods. Although studies that utilize focus group and interview techniques will not endeavour to establish causal links between a number of variables, the underlying epistemology of qualitative work will facilitate a detailed and nuanced understanding of key issues that can enhance our understating of quantitative work already undertaken. Additionally, qualitative research can also function without reference to quantitative work and provide new and important insights that help to further knowledge of pain responses which are undoubtedly subjective and therefore entirely appropriate for investigation utilizing a variety of robust phenomenological approaches.

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References and recommended reading

Papers of particular interest, published within the annual period of review, have been highlighted as:

• of special interest

•• of outstanding interest

Additional references related to this topic can also be found in the Current World Literature section in this issue (p. 148).

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health; methodology; pain; qualitative; subjective

© 2009 Lippincott Williams & Wilkins, Inc.