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The Interaction of Persistent Pain and Post-Traumatic Re-Experiencing: A Qualitative Study in Torture Survivors
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Original Article
The Interaction of Persistent Pain and Post-Traumatic Re-Experiencing: A Qualitative Study in Torture Survivors Bethany Taylor, DClinPsy, Kenneth Carswell, DClinPsy, and Amanda C. de C Williams, PhD, CPsychol Department of Rehabilitation Psychology (B.T.), and The Traumatic Stress Clinic (K.C.), Camden & Islington NHS Foundation Trust, London; and Department of Clinical, Educational & Health Psychology (A.C.W.), University College London, London, United Kingdom
Abstract Context. There are limited studies and few theoretical models addressing the interaction between pain and symptoms of post-traumatic stress disorder, with none concerning this interaction in survivors of torture, who frequently report persistent pain. Objectives. We aimed to explore the relationship between persistent pain and re-experiencing of traumatic events in survivors of torture. Methods. Nine torture survivors were interviewed about their experiences of pain and re-experiencing, and the results analyzed using interpretative phenomenological analysis. Levels of pain and post-traumatic stress were assessed. Results. Four superordinate themes emerged, namely ‘‘pain is the enemy,’’ ‘‘pain and intrusive memories are connected,’’ ‘‘changed identity,’’ and ‘‘resilience and resources.’’ These themes showed a complex relationship between torture, pain, re-experiencing, and other aspects of individual experience, such as the multiple losses experienced by torture survivors. Both pain and post-traumatic stress disorder symptoms were shown to have profound impacts on the everyday lives of participants. Conclusion. The results suggest that the relationship between pain and reexperiencing requires a broad model that considers the impact of a range of individual, social, and environmental factors on the interaction between pain and traumatic stress symptoms in survivors of torture. The study has clinical implications, most notably the need to attempt more integrated treatment of pain and traumatic symptoms where they occur together, and to consider the meaning and impact of pain when treating survivors of torture. Further investigation of the relationship between pain and traumatic stress symptoms in torture survivors is needed, as are studies of combined treatment for pain and trauma. J Pain Symptom Manage 2013;46:546e555. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Address correspondence to: Bethany Taylor, DClinPsy, Montague Ward, St. Pancras Hospital, 4 St. Pancras Way, London NW1 0PE, United Kingdom. E-mail: [email protected] Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Accepted for publication: October 25, 2012.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2012.10.281
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Key Words PTSD, pain, refugees, torture
Introduction The development of acute pain into a persistent disabling problem is consistently predicted by pain intensity and distress.1,2 This makes it a common outcome of torture,3e5 which is the infliction of pain to destroy, dehumanize, and terrorize,6,7 with profound effects on physical and psychological health.3,8e10 Persistent pain and post-traumatic stress disorder (PTSD) symptoms co-occur at high rates in civilian, military, and clinical populations,11e16 but their relationship is complex and poorly understood. Biases in attention, anxiety, sensitivity to cues, and avoidance are common to both, although topological similarity of behaviors does not imply a common function. Early models of the relationship by Asmundson et al.17 and Sharp and Harvey18 described PTSD symptoms triggering or being triggered by pain,17,19,20 and were extended by Liedl and Knaevelsrud21 and by Beck and Clapp22 as models of behavioral maintenance, particularly of avoidance of cues. Additionally, cognitive components of chronic PTSD, such as beliefs about mental defeat23 and permanent damage, elaborated by Ehlers and colleagues in survivors of traumatic assault24,25 and former political prisoners,23 also are reported by people with persistent pain.26 Application of the PTSD construct in this field is limited by its Western roots27e29 and by reliance on measures developed in nonrefugee populations.30 Alternative models have been proposed for symptoms in non-Western populations.31,32 Rather than using the diagnosis, we focused on the central symptom of reexperiencing traumatic events33 and its relationship to pain. Re-experiencing (included in all the models above) is best explained by the empirically supported dual representation theory of memory and imagery,34 which describes the information processing underlying intrusive memory phenomena. Memories contain autobiographically referenced information that can be accessed voluntarily, or sensory representations of somatic and affective experience, not time referenced and re-experienced
as if in the present. Incompletely processed memories are maintained in the sensory form by attempts to suppress thoughts and avoid cues. Although this model does not incorporate pain, such re-experiencing is commonly reported by torture survivors in association with pain exacerbation. We, therefore, took a qualitative approach to exploring the association between re-experiencing and pain.
Methods Participants A purposive sample was interviewed;35 two female and eight male participants responded to an invitation sent to patients attending a specialist traumatic stress clinic who were identified by clinical staff as adult survivors of torture in treatment for PTSD symptoms. Inclusion criteria were that 1) participants currently reported re-experiencing; they did not have to meet full diagnostic criteria for PTSD, as it is not uncommon for torture survivors to report severe symptoms but not in all domains required for diagnosis;36 and 2) they reported moderate-to-severe pain every day for six months, not as a result of cancer or active disease and after torture. Those with a learning disability or in the U.K. for less than three months were excluded. The study was approved by the National Health Service Ethics Committee and ran for six months from October 2008. Of the 10 participants, one man could not be interviewed in the time frame. All participants had been granted asylum status or indefinite leave to remain in the U.K. All but one participant (P7) had multiple persistent pains, most commonly back pain and headaches (see Results section). Four of the nine interviews were conducted in English, and five used trained and experienced interpreters from the clinic. The interviewer (B. T.) spoke English and was of white British origin. Before the interview, she briefed interpreters on her aims and methods and their role in realizing these.
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Procedure Participants read an information sheet before the interview, discussed it at the start of the interview, were assured of anonymity and confidentiality, and signed the consent form. They were paid £10 plus travel expenses. All interviews were audio recorded and transcribed verbatim for interpretative phenomenological analysis.35 Table 1 shows the interview schedule, which formed a basis for flexible exploration of issues. The Posttraumatic Stress Diagnostic Scale (PDSÒ)37 was administered as a structured interview for consistency, to quantify symptom severity. Seventeen of the 49 items sample avoidance, re-experiencing, and arousal, with response options from 0 ¼ not at all or only one time to 3 ¼ five or more times a week/ almost always; the remainder address current distressing situations, current impairment, and symptom duration. A simple numerical rating scale was used for average and for worst
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pain, where 0 ¼ no pain and 10 ¼ extreme pain.
Analysis Following the interpretative phenomenological analysis method described by Smith and Osborn,35 each transcript was read several times to establish familiarity with the account, then annotated, marking material of interest, and reannotated noting emergent themes. These themes and their connections were clustered into superordinate themes and constituent subthemes, each illustrated by segments of the transcript. Validity concerns were addressed, first by returning repeatedly to the transcripts to check that identified themes and superordinate themes corresponded to the data; and second, through audit by an independent researcher of most transcripts and the analysis, checking particularly for representation of data and
Table 1 Interview Schedule Can you tell me about your pain? Subprompts: What do you think causes the pain? Do you think your pain is going to get better or worse or stay the same? What does pain stop you doing? What do you still do but no longer enjoy? Does anyone understand your pain? Who? What do you do to cope with the pain? What makes your pain better or worse? Posttraumatic Stress Diagnostic Scale37 Could you take me through a recent episode of pain in detail? Subprompts: What did you feel in your body (physiological sensations)? How did you feel (emotions)? What thoughts went through your mind? What images went through your mind? Could you take me through a recent time when you experienced a memory from the past related to the torture? Subprompts: What did you feel in your body (physiological sensations)? How did you feel (emotions)? What thoughts went through your mind? What images went through your mind? Was there any pain during this memory? If you were having these difficulties back in [country], who would you have seen/told? When you talk about the trauma do you notice anything about the pain? Subprompts: During the interview today? When you have talked to people about it in the past? When you talk about your pain do you notice anything about the pain? Subprompts: Better, worse, no difference? During the interview today? When you have talked to people about it in the past? Do you avoid talking about the pain?
5 5 9 10 3 6 6 6 10 Family In a hostel Family Family Family Family Alone Alone Alone 10/10 8/10 10/10 8/10 7/10 10/10 5/10 10/10 10/10 Multiple sites and headaches Multiple sites and headaches Spine, feet, legs, and headaches Back, shoulder, leg, and headaches Back and knee Neck and shoulder Back Back, neck, shoulder, knee, and headaches Back and headaches Yes Yes Yes Yes No Yes Yes Yes Yes
Pain Sites Criteria Met for PTSD Diagnosis? Years Since Torture & Pain Onset
9 5 15 12 3 6 10 6 10 PTSD ¼ post-traumatic stress disorder. a Measured on a zero to10 numeric rating scale.
This affected the sense of control over pain, all but one participant describing pain as unpredictable in where, how or for how long it occurred:
Male Male Male Male Male Male Male Female Female
I was feeling like somebody pushing my bone and sawed the bone like that time. [P4]
P1 P2 P3 P4 P5 P6 P7 P8 P9
Pain Inflicted From Outside. Participants experienced pain as inflicted on them rather than originating within:
Age
. the pain is with me for long year. So like something is apart from myself, but live with me every day, because something that’s permanent, my pain will not go in the future; that’s it.
Area of Origin and Use of Interpreter [I]
Pain as Separate From Self. P8 described pain as separate from but attached to her, and fear that the pain will remain with her permanently:
Gender
This theme provides a pain context for subsequent themes. Participants used violent descriptions and metaphors, referring to pain as if coming from outside the body; these characteristics imply similarity to the pain of torture and are noticeably similar to descriptions of some post-traumatic symptoms.
Participants
Pain Is the Enemy
Table 2 Participant Demographic Information
Participants are described in Table 2. None was employed. On PDS scores, eight participants met diagnostic criteria for current PTSD and the remaining participant (P5) met criteria for re-experiencing and arousal, but provided too little information on the avoidance subscale to permit diagnosis. Symptom ratings for all participants were ‘‘severe’’ or ‘‘moderate to severe.’’ All had experienced PTSD symptoms for six months or more (Table 2). Four superordinate themes emerged from the data analysis. Each is described with constituent subthemes that are illustrated by excerpts from the transcripts.
Highest Rated Pain Intensitya
Results
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40 42 46 50 44 40 38 49 47
Lived With
grounding of themes. Amendments were made where necessary.
Middle East East Africa [I] Middle East Middle East Central Africa [I] Middle East [I] East Africa [I] Middle East East Asia [I]
Years in the U.K.
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Because of my experience I know the pains will attack me anytimes, anywhere. [P9]
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Pain as a Battle. P3 used the idea of pain being engaged in a battle with him:
I feel like it start again now. I already have pain, but I feel it straight away even if there is no pain, but I remember the thing, I feel the pain again, and now the incident just happened now. [P8]
You have to fight: it’s a war, I have war with pain, open war, it’s my enemy. I do not have enemy in life, this is my enemy. [P3]
Participants were not surprised by this, a common experience in their therapy sessions:
P3 had been a soldier, perhaps influencing his choice of metaphor, but spoke as if he challenged the control of pain by doing the opposite of what pain ‘‘wanted’’ him to do.
Since this morning I woke up, I knew that I am coming here, then what went through here with [psychologist], it just increase the pain here because it just remind me of the past. [P6]
Pain and Intrusive Memories Are Connected All patients described interactions between pain and post-traumatic stress symptoms, at multiple levels, from a general belief in connection between body and mind to specific interactions between particular trauma memories and pains, and between hypervigilance and pain. Links Between Body and Mind. Eight of the nine participants described some interrelationship between their state of mind and bodily pain. When describing what decreased or exacerbated pain, participants identified emotions as important mediators: positive emotions reduced pain; and fear, sadness, and anger increased pain. When I feel happiness, that’s much better for me, better than taking medicine. [P4] I feel it when I get very stressed, I got a lot of headaches, and I have straightaway a pain in my shoulder. [P8] Traumatic Memories Trigger Pain. There was a strong link between traumatic memories and pain, mostly described as unidirectional, from memory to pain. Pain was described as a consequence of the memory, not as part of it. When they come, the images, the torture, the humiliation, the torture in the prison, you know the whole thing, that makes trigger to my pain. [P6] During the interviews, it was observed that pain was triggered by memories of the trauma: Now you are speaking to me about this I feel straightaway that’s a pain, really straightaway,
P1 and P2 describe how persistent pain, memories, and emotions interact in a way that is difficult to disaggregate: When they [memories of torture] come into my mind, when I have headache or pain in my body, anxious or stress or upset or sad, when I talk to anyone about that. like a hammer, bang my pain, make me more anxious, is more painful. [P1] I get the headache when I feel myself going to remember one of those occasions. and sometimes I feel like blurry and dizzy because of that. [P2] Pain Can Trigger Memories of Trauma. One participant did not report pain arising from trauma memories, but pain as a trigger to recollections of his torture. Every day I try to block out the thoughts of what happened to me, suddenly I am walking and then ow! there is this terrible pain in my knee, then it will make me think ‘‘Oh, this happened, that happened.’’ [P5] Pain and Trauma Act Together. Pain and trauma could compound other problems; for instance, hypervigilance for one participant, disrupted sleep for another. The pain, the headache. because I am always scared all the time, because I feel I am being watched all the time. [P2]
Changed Identity The multiple losses from torture, becoming a refugee and asylum seeker, and limitations
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imposed by pain, were encapsulated in changed identity and loss of a future. I was very educated, and now I find myself, I can’t do anything completely, even I can’t help myself with home activities so I need somebody for everything, to help me with bathing, with cooking, with shopping and make me, you know, less, less, yeah, I’m like a hopeless person and I find that I have no future for myself. [P8] The struggle with pain and post-traumatic symptoms seemed to maintain those negative changes, blocking hope of restoration. All expressed concern about the future, unable to envisage significant improvement in pain or in post-traumatic stress symptoms; this engendered hopelessness about managing activities that might improve quality of life. In this example, physical activity, previously a source of pride and a social opportunity, is disrupted by memories: I am a very good swimmer, I try to go swimming, but if I get my memories I don’t go and I stop everything and I try to go back. When I return I just sit in my room on my own. I remember the thing that I used to enjoy and I have stopped doing what I enjoy, so I get frustrated. [P2] Another described how pain, and his beliefs about pain, constituted an obstacle to attempting new activities: So we have decided that I should do some sports, and, you know, gain some strength, but I am worried because when I run I am worried about the pain that will come in my knee, and so, I fear that. [P5] When pain and PTSD symptoms, in particular intrusive memories, are unpredictable, uncontrollable, and debilitating, the individual may stop planning or attempting activities that prompt them, thus narrowing choices and opportunities for recovery. One participant related how his pain was within control but the traumatic stress was not: Like for me the pain is there, it exist, the traumatic stress exist, so the pain is under my control, but the traumatic stress is not under my control, you see, so I can’t predict, I can’t say I am now controlling my trau-
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matic stress, because these images are still there, these feelings still there. [P3]
Resilience and Resources Participants talked about how social support and religious faith helped them to live with the distress and problems of persistent pain and post-traumatic stress symptoms: Now because my family is here when I am going to [psychologist], then that is much better when I am coming home because my family, they help me because they know my situation. [P1] Prayer, of course, if it didn’t help I wouldn’t continue praying. Prayer is what protects me. [P5] Participants also spoke of specific interventions that helped, but noticeably more often for post-traumatic stress symptoms or mood; few helped pain: It [relaxation] help my depression, especially when I wake up with nightmares . no, no, it doesn’t help the headaches, but it helps with the depression. [P2]
Discussion Four superordinate themes emerged from this study. There was a striking representation of pain as a combatant, pain is the enemy, in which pain was separate from the self, an assault on the body, using metaphors that often drew on torture practices. The second theme, pain and intrusive memories are connected, was represented for all but one participant as increases in pain triggered by re-experiencing of a memory, flashback, or nightmare, sometimes mediated by particular emotions, such as anxiety and sadness. The third theme, changed identity, described the contributions of pain to identity loss within the broader context of identity change and loss as a refugee and asylum seeker. The final theme, resilience and resources, captured participants’ ability to use psychological, spiritual, and social resources to cope with pain, trauma symptoms, and other challenges. The results have implications for models outlining the relationship between PTSD symptoms and pain in torture survivors.
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Relationships between pain and trauma symptoms were predominantly in the direction from trauma memories/re-experiencing to increases in existing pain. This may be explained by a shift of attention toward pain as a result of the intrusive memory,38 with pain gaining salience as attention is diverted from current activities; pain can be directly increased by negative affect via several inhibitory and facilitatory pathways.39 This is perhaps best conceptualized within dual representation theory34 because trauma memories include somatosensory and affective components.34,40 The association between pain and current distress was noted in male torture survivors by Carlsson et al.,41 and further research into this association is warranted because it has implications for treatment. Our findings also suggest a more important role for the complex and diverse meanings of persistent pain from torture, from defeat and shame at the hands of perpetrators to pride in survival and a memorial to those who died.42 Part of this meaning is exemplified by the theme pain is the enemy, reminiscent of beliefs about mental defeat23 and permanent damage.24,25 The third and fourth themes, changed identity and resilience and resources, captured wider contextual factors that also are missing from earlier models.21e23 Identity change in persistent pain,43 contingent on the interference of persistent pain with valued activities and goals, was compounded by the losses of material possessions, status, family, friends, and community that are inherent in becoming a refugee. Struggling with pain and with such identity change makes enormous demands on resources, but resilience and resources underline the importance of avoiding characterizing torture survivors as helpless.44 Descriptions were consistent with findings of social support as an important contributor to psychological adjustment and well-being among refugees,45 the importance of family and religious beliefs,46 and the protective effect of confidence in coping and support against disabling effects of persistent pain47 and PTSD.48 The themes are not incompatible with the models previously described concerning the relationship between pain and PTSD in torture survivors, but rather suggest a wider formulation including cognitive themes such as loss of self or identity, functional ability, and social
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context.49 It might be, for instance, that characterization of pain and environmental stressors mediate the relationship between pain and post-traumatic stress symptoms. Pain at the time of torture contributes to later psychological symptoms,50 and the meaning of the experience and its consequences may have a significant influence on the extent to which this occurs. We would argue that models that aspire to application to the difficulties of torture survivors need to take meaning and context into account, rather than to limit themselves to symptoms and processes of symptom production and maintenance.
Strengths and Limitations This study addressed the meanings of pain and its interconnections with symptoms of re-experiencing in greater detail than previously reported in this population. It is not unreasonable to expect different associations of pain from repeated or prolonged torture from those of pain resulting from a single major event, such as assault.36,51 One limitation is the lack of representativeness of the wider torture survivor population in treatment for PTSD, a diverse and under-researched group.52 Although a semistructured interview permitted spontaneous comment, the schedule guided participants to specific areas of experience. Questions about imagery could have enriched accounts; intrusive imagery appears to be processed differently from verbal memory, with more threat-related emotion.53 Our results, to some extent, may reflect depression, common in refugee and asylum seeker populations,41,54 and given that we focused only on re-experiencing, the avoidance and arousal clusters of PTSD remain to be explored in relation to persistent pain. A second limitation was the use of interpreters; although interviews and transcript analyses ideally use participants’ own languages, this was not possible, and restriction to fluent English speakers was clearly undesirable.42,55,56 Observing methodological considerations in using interpreters,57 losses resulting from interpretation were mitigated by using professional interpreters experienced with this population, who respected the richness of the material and explained personal and culturally specific metaphors. However, interpretation inevitably changes
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data in unquantifiable ways,10 and an interpreter is never ‘‘neutral.’’58
Clinical Implications for Working With Torture Survivors These themes highlight a number of potential threats to recovery from PTSD and pain, and to engagement with psychological interventions. The theme pain is the enemy illustrates the intensity and ferocity of the pain, underlining the importance of routinely assessing pain in torture survivors, and keeping it in mind during psychological treatment. Furthermore, the interconnection between discussing trauma and worsening pain, during or after the session with the psychologist, can be a deterrent to attending treatment. Pain may increase the risk of dropout, already high in people with PTSD symptoms; increased awareness of the physical as well as the psychological impact of talking therapies could help preparation for therapy and be monitored throughout. Currently, and despite the obligation for reparation,59 few services in Europe provide combined specialist treatment of pain and PTSD. The U.K. guidelines for PTSD60 recommend trauma-focused cognitive behavioral therapy (CBT) or eye movement desensitization and reprocessing therapy; and CBT and behavioral therapy are the most common approaches to psychological management for persistent pain, with good evidence of efficacy for pain and mood.61 There are no systematic studies of combined treatment, although some studies describe a concurrent beneficial effect of CBT treatment on PTSD symptoms and pain-related functioning62 and on pain intensity;63 others have tested efficacy and acceptability of pain treatment in traumatized refugees.21 Although results are promising, the limited improvements reported in other pain-related domains urges cautious interpretation and further large-scale research.
Future Directions This is a preliminary exploration of a relatively under-researched area, providing a basis for further enquiry. It is unclear to what extent there may be meanings of pain specific to torture; further study would enrich understanding of persistent pain in torture survivors and assist clinicians treating their pain. The dual
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representation model34 offers constructs that are most compatible with our findings, and is heuristic, but ethical considerations are particularly important in this population, the emphasis being on providing direct benefit to participants. Despite its limitations, this study has important implications for clinical practice. It suggests that both pain and PTSD are an integral part of clients’ experiences and require addressing with reference to the important contributory effects of multiple individual and social factors. This is consistent with models that propose that social and environmental stressors mediate the effect of trauma exposure on mental health.32,64
Disclosures and Acknowledgments No funding was received for this study, and the authors declare no conflicts of interest. The authors are grateful to Cathy Gingell, Clinical Psychologist, for auditing transcripts and commenting helpfully on the analysis; to the Traumatic Stress Clinic, Camden & Islington Foundation Trust, for hosting this study; and to the nine participants who took part in the interviews.
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41. Carlsson JM, Mortensen EL, Kastrup M. Predictors of mental health and quality of life in male tortured refugees. Nord J Psychiatry 2006;60:51e57. 42. Williams AC, Volkmann AM. Understanding pain from torture: cultural considerations. J Pain Manag 2010;3:359e366. 43. Sutherland R, Morley S. Self-pain enmeshment: future possible selves, sociotropy, autonomy and adjustment to chronic pain. Pain 2008;137:366e377. 44. Pupavac V. Refugees in the ‘sick role’: Stereotyping refugees and eroding refugee rights. Geneva: UNHCR Policy Development and Evaluation Service, 2006. 45. Jasinskaja-Lahti I, Liebkind K, Jaakkola M, Reuter A. Perceived discrimination, social support networks, and psychological well-being among three immigrant groups. J Cross Cult Psychol 2006;37: 293e311. 46. Schweitzer RD, Greenslade J, Kagee A. Coping strategies of refugees from the Sudan: a narrative account of resilience themes. Aust N Z J Psychiatry 2007;41:282e287. 47. Arnstein P, Cudill M, Mandel C, Norris A, Beasley R. Self efficacy as a mediator of the relationship between pain intensity, disability and depression in chronic pain patients. Pain 1999;80: 483e491. 48. Van Ommeren M, de Jong JT, Sharma B, et al. Psychiatric disorders among tortured Bhutanese refugees in Nepal. Arch Gen Psychiatry 2001;58: 475e482. 49. Watters C. Emerging paradigms in the mental health care of refugees. Soc Sci Med 2001;52: 1709e1718.
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53. Hagenaars MA, Brewin CR, van Minnen A, Holmes EA, Hoogduin KAL. Intrusive images and intrusive thoughts as different phenomena: two experimental studies. Memory 2010;18:76e84. 54. Fazel M, Wheeler J, Danesh J. Prevalence of serious mental disorder among 7000 refugees resettled in western countries: systematic review. Lancet 2005;365:1309e1314. 55. Diller A. Cross-cultural pain semantics. Pain 1980;9:9e26. 56. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Focus 2006;4:140e149. 57. Vara R, Patel N. Working with interpreters in qualitative psychological research: methodological and ethical issues. Qual Res Psychol 2012;9:75e87. 58. Patel N. Speaking with the silent: addressing issues of empowerment when working with interpreters and refugee people. In: Raval H, Tribe R, eds. Working with interpreters in mental health. London: Brunner-Routledge, 2003:219e237. 59. O’Connell J. Gambling with the psyche: does prosecuting human rights violators console their victims? Harvard Int Law J 2005;46:295e345. 60. National Institute for Clinical Excellence. The management of PTSD in adults and children in primary and secondary care. National Clinical Practice Guideline Number 26, 2005. London: Gaskell and the British Psychological Society, 2007. 61. Eccleston C, Williams AC, Morley S. Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database Syst Rev 2009;2:CD007407.
51. De Jong JTVM, Komproe IH, Spinazzola J, van der Kolk BA, Van Ommeren MH. DESNOS in three post-conflict settings: assessing cross-cultural construct equivalence. J Trauma Stress 2005;18:13e21.
62. Shipherd JC, Beck JG, Hamblen JL, Lackner JM, Freeman JB. A preliminary examination of treatment for posttraumatic stress disorder in chronic pain patients: a case study. J Trauma Stress 2003; 16:451e457. € 63. St alnacke BM, Ostman A. Post-traumatic stress in patients with injury-related chronic pain participating in a multimodal pain rehabilitation program. Neuropsychiatr Dis Treat 2010;6:59e66.
52. Nickerson A, Bryant RA, Silove D, Steel Z. A critical review of psychological treatments of posttraumatic stress disorder in refugees. Clin Psychol Rev 2011;31:399e417.
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Journal of Pain and Symptom Management
Vol. 46 No. 4 October 2013
Original Article
The Interaction of Persistent Pain and Post-Traumatic Re-Experiencing: A Qualitative Study in Torture Survivors Bethany Taylor, DClinPsy, Kenneth Carswell, DClinPsy, and Amanda C. de C Williams, PhD, CPsychol Department of Rehabilitation Psychology (B.T.), and The Traumatic Stress Clinic (K.C.), Camden & Islington NHS Foundation Trust, London; and Department of Clinical, Educational & Health Psychology (A.C.W.), University College London, London, United Kingdom
Abstract Context. There are limited studies and few theoretical models addressing the interaction between pain and symptoms of post-traumatic stress disorder, with none concerning this interaction in survivors of torture, who frequently report persistent pain. Objectives. We aimed to explore the relationship between persistent pain and re-experiencing of traumatic events in survivors of torture. Methods. Nine torture survivors were interviewed about their experiences of pain and re-experiencing, and the results analyzed using interpretative phenomenological analysis. Levels of pain and post-traumatic stress were assessed. Results. Four superordinate themes emerged, namely ‘‘pain is the enemy,’’ ‘‘pain and intrusive memories are connected,’’ ‘‘changed identity,’’ and ‘‘resilience and resources.’’ These themes showed a complex relationship between torture, pain, re-experiencing, and other aspects of individual experience, such as the multiple losses experienced by torture survivors. Both pain and post-traumatic stress disorder symptoms were shown to have profound impacts on the everyday lives of participants. Conclusion. The results suggest that the relationship between pain and reexperiencing requires a broad model that considers the impact of a range of individual, social, and environmental factors on the interaction between pain and traumatic stress symptoms in survivors of torture. The study has clinical implications, most notably the need to attempt more integrated treatment of pain and traumatic symptoms where they occur together, and to consider the meaning and impact of pain when treating survivors of torture. Further investigation of the relationship between pain and traumatic stress symptoms in torture survivors is needed, as are studies of combined treatment for pain and trauma. J Pain Symptom Manage 2013;46:546e555. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Address correspondence to: Bethany Taylor, DClinPsy, Montague Ward, St. Pancras Hospital, 4 St. Pancras Way, London NW1 0PE, United Kingdom. E-mail: [email protected] Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Accepted for publication: October 25, 2012.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2012.10.281
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Key Words PTSD, pain, refugees, torture
Introduction The development of acute pain into a persistent disabling problem is consistently predicted by pain intensity and distress.1,2 This makes it a common outcome of torture,3e5 which is the infliction of pain to destroy, dehumanize, and terrorize,6,7 with profound effects on physical and psychological health.3,8e10 Persistent pain and post-traumatic stress disorder (PTSD) symptoms co-occur at high rates in civilian, military, and clinical populations,11e16 but their relationship is complex and poorly understood. Biases in attention, anxiety, sensitivity to cues, and avoidance are common to both, although topological similarity of behaviors does not imply a common function. Early models of the relationship by Asmundson et al.17 and Sharp and Harvey18 described PTSD symptoms triggering or being triggered by pain,17,19,20 and were extended by Liedl and Knaevelsrud21 and by Beck and Clapp22 as models of behavioral maintenance, particularly of avoidance of cues. Additionally, cognitive components of chronic PTSD, such as beliefs about mental defeat23 and permanent damage, elaborated by Ehlers and colleagues in survivors of traumatic assault24,25 and former political prisoners,23 also are reported by people with persistent pain.26 Application of the PTSD construct in this field is limited by its Western roots27e29 and by reliance on measures developed in nonrefugee populations.30 Alternative models have been proposed for symptoms in non-Western populations.31,32 Rather than using the diagnosis, we focused on the central symptom of reexperiencing traumatic events33 and its relationship to pain. Re-experiencing (included in all the models above) is best explained by the empirically supported dual representation theory of memory and imagery,34 which describes the information processing underlying intrusive memory phenomena. Memories contain autobiographically referenced information that can be accessed voluntarily, or sensory representations of somatic and affective experience, not time referenced and re-experienced
as if in the present. Incompletely processed memories are maintained in the sensory form by attempts to suppress thoughts and avoid cues. Although this model does not incorporate pain, such re-experiencing is commonly reported by torture survivors in association with pain exacerbation. We, therefore, took a qualitative approach to exploring the association between re-experiencing and pain.
Methods Participants A purposive sample was interviewed;35 two female and eight male participants responded to an invitation sent to patients attending a specialist traumatic stress clinic who were identified by clinical staff as adult survivors of torture in treatment for PTSD symptoms. Inclusion criteria were that 1) participants currently reported re-experiencing; they did not have to meet full diagnostic criteria for PTSD, as it is not uncommon for torture survivors to report severe symptoms but not in all domains required for diagnosis;36 and 2) they reported moderate-to-severe pain every day for six months, not as a result of cancer or active disease and after torture. Those with a learning disability or in the U.K. for less than three months were excluded. The study was approved by the National Health Service Ethics Committee and ran for six months from October 2008. Of the 10 participants, one man could not be interviewed in the time frame. All participants had been granted asylum status or indefinite leave to remain in the U.K. All but one participant (P7) had multiple persistent pains, most commonly back pain and headaches (see Results section). Four of the nine interviews were conducted in English, and five used trained and experienced interpreters from the clinic. The interviewer (B. T.) spoke English and was of white British origin. Before the interview, she briefed interpreters on her aims and methods and their role in realizing these.
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Procedure Participants read an information sheet before the interview, discussed it at the start of the interview, were assured of anonymity and confidentiality, and signed the consent form. They were paid £10 plus travel expenses. All interviews were audio recorded and transcribed verbatim for interpretative phenomenological analysis.35 Table 1 shows the interview schedule, which formed a basis for flexible exploration of issues. The Posttraumatic Stress Diagnostic Scale (PDSÒ)37 was administered as a structured interview for consistency, to quantify symptom severity. Seventeen of the 49 items sample avoidance, re-experiencing, and arousal, with response options from 0 ¼ not at all or only one time to 3 ¼ five or more times a week/ almost always; the remainder address current distressing situations, current impairment, and symptom duration. A simple numerical rating scale was used for average and for worst
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pain, where 0 ¼ no pain and 10 ¼ extreme pain.
Analysis Following the interpretative phenomenological analysis method described by Smith and Osborn,35 each transcript was read several times to establish familiarity with the account, then annotated, marking material of interest, and reannotated noting emergent themes. These themes and their connections were clustered into superordinate themes and constituent subthemes, each illustrated by segments of the transcript. Validity concerns were addressed, first by returning repeatedly to the transcripts to check that identified themes and superordinate themes corresponded to the data; and second, through audit by an independent researcher of most transcripts and the analysis, checking particularly for representation of data and
Table 1 Interview Schedule Can you tell me about your pain? Subprompts: What do you think causes the pain? Do you think your pain is going to get better or worse or stay the same? What does pain stop you doing? What do you still do but no longer enjoy? Does anyone understand your pain? Who? What do you do to cope with the pain? What makes your pain better or worse? Posttraumatic Stress Diagnostic Scale37 Could you take me through a recent episode of pain in detail? Subprompts: What did you feel in your body (physiological sensations)? How did you feel (emotions)? What thoughts went through your mind? What images went through your mind? Could you take me through a recent time when you experienced a memory from the past related to the torture? Subprompts: What did you feel in your body (physiological sensations)? How did you feel (emotions)? What thoughts went through your mind? What images went through your mind? Was there any pain during this memory? If you were having these difficulties back in [country], who would you have seen/told? When you talk about the trauma do you notice anything about the pain? Subprompts: During the interview today? When you have talked to people about it in the past? When you talk about your pain do you notice anything about the pain? Subprompts: Better, worse, no difference? During the interview today? When you have talked to people about it in the past? Do you avoid talking about the pain?
5 5 9 10 3 6 6 6 10 Family In a hostel Family Family Family Family Alone Alone Alone 10/10 8/10 10/10 8/10 7/10 10/10 5/10 10/10 10/10 Multiple sites and headaches Multiple sites and headaches Spine, feet, legs, and headaches Back, shoulder, leg, and headaches Back and knee Neck and shoulder Back Back, neck, shoulder, knee, and headaches Back and headaches Yes Yes Yes Yes No Yes Yes Yes Yes
Pain Sites Criteria Met for PTSD Diagnosis? Years Since Torture & Pain Onset
9 5 15 12 3 6 10 6 10 PTSD ¼ post-traumatic stress disorder. a Measured on a zero to10 numeric rating scale.
This affected the sense of control over pain, all but one participant describing pain as unpredictable in where, how or for how long it occurred:
Male Male Male Male Male Male Male Female Female
I was feeling like somebody pushing my bone and sawed the bone like that time. [P4]
P1 P2 P3 P4 P5 P6 P7 P8 P9
Pain Inflicted From Outside. Participants experienced pain as inflicted on them rather than originating within:
Age
. the pain is with me for long year. So like something is apart from myself, but live with me every day, because something that’s permanent, my pain will not go in the future; that’s it.
Area of Origin and Use of Interpreter [I]
Pain as Separate From Self. P8 described pain as separate from but attached to her, and fear that the pain will remain with her permanently:
Gender
This theme provides a pain context for subsequent themes. Participants used violent descriptions and metaphors, referring to pain as if coming from outside the body; these characteristics imply similarity to the pain of torture and are noticeably similar to descriptions of some post-traumatic symptoms.
Participants
Pain Is the Enemy
Table 2 Participant Demographic Information
Participants are described in Table 2. None was employed. On PDS scores, eight participants met diagnostic criteria for current PTSD and the remaining participant (P5) met criteria for re-experiencing and arousal, but provided too little information on the avoidance subscale to permit diagnosis. Symptom ratings for all participants were ‘‘severe’’ or ‘‘moderate to severe.’’ All had experienced PTSD symptoms for six months or more (Table 2). Four superordinate themes emerged from the data analysis. Each is described with constituent subthemes that are illustrated by excerpts from the transcripts.
Highest Rated Pain Intensitya
Results
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40 42 46 50 44 40 38 49 47
Lived With
grounding of themes. Amendments were made where necessary.
Middle East East Africa [I] Middle East Middle East Central Africa [I] Middle East [I] East Africa [I] Middle East East Asia [I]
Years in the U.K.
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Because of my experience I know the pains will attack me anytimes, anywhere. [P9]
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Pain as a Battle. P3 used the idea of pain being engaged in a battle with him:
I feel like it start again now. I already have pain, but I feel it straight away even if there is no pain, but I remember the thing, I feel the pain again, and now the incident just happened now. [P8]
You have to fight: it’s a war, I have war with pain, open war, it’s my enemy. I do not have enemy in life, this is my enemy. [P3]
Participants were not surprised by this, a common experience in their therapy sessions:
P3 had been a soldier, perhaps influencing his choice of metaphor, but spoke as if he challenged the control of pain by doing the opposite of what pain ‘‘wanted’’ him to do.
Since this morning I woke up, I knew that I am coming here, then what went through here with [psychologist], it just increase the pain here because it just remind me of the past. [P6]
Pain and Intrusive Memories Are Connected All patients described interactions between pain and post-traumatic stress symptoms, at multiple levels, from a general belief in connection between body and mind to specific interactions between particular trauma memories and pains, and between hypervigilance and pain. Links Between Body and Mind. Eight of the nine participants described some interrelationship between their state of mind and bodily pain. When describing what decreased or exacerbated pain, participants identified emotions as important mediators: positive emotions reduced pain; and fear, sadness, and anger increased pain. When I feel happiness, that’s much better for me, better than taking medicine. [P4] I feel it when I get very stressed, I got a lot of headaches, and I have straightaway a pain in my shoulder. [P8] Traumatic Memories Trigger Pain. There was a strong link between traumatic memories and pain, mostly described as unidirectional, from memory to pain. Pain was described as a consequence of the memory, not as part of it. When they come, the images, the torture, the humiliation, the torture in the prison, you know the whole thing, that makes trigger to my pain. [P6] During the interviews, it was observed that pain was triggered by memories of the trauma: Now you are speaking to me about this I feel straightaway that’s a pain, really straightaway,
P1 and P2 describe how persistent pain, memories, and emotions interact in a way that is difficult to disaggregate: When they [memories of torture] come into my mind, when I have headache or pain in my body, anxious or stress or upset or sad, when I talk to anyone about that. like a hammer, bang my pain, make me more anxious, is more painful. [P1] I get the headache when I feel myself going to remember one of those occasions. and sometimes I feel like blurry and dizzy because of that. [P2] Pain Can Trigger Memories of Trauma. One participant did not report pain arising from trauma memories, but pain as a trigger to recollections of his torture. Every day I try to block out the thoughts of what happened to me, suddenly I am walking and then ow! there is this terrible pain in my knee, then it will make me think ‘‘Oh, this happened, that happened.’’ [P5] Pain and Trauma Act Together. Pain and trauma could compound other problems; for instance, hypervigilance for one participant, disrupted sleep for another. The pain, the headache. because I am always scared all the time, because I feel I am being watched all the time. [P2]
Changed Identity The multiple losses from torture, becoming a refugee and asylum seeker, and limitations
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imposed by pain, were encapsulated in changed identity and loss of a future. I was very educated, and now I find myself, I can’t do anything completely, even I can’t help myself with home activities so I need somebody for everything, to help me with bathing, with cooking, with shopping and make me, you know, less, less, yeah, I’m like a hopeless person and I find that I have no future for myself. [P8] The struggle with pain and post-traumatic symptoms seemed to maintain those negative changes, blocking hope of restoration. All expressed concern about the future, unable to envisage significant improvement in pain or in post-traumatic stress symptoms; this engendered hopelessness about managing activities that might improve quality of life. In this example, physical activity, previously a source of pride and a social opportunity, is disrupted by memories: I am a very good swimmer, I try to go swimming, but if I get my memories I don’t go and I stop everything and I try to go back. When I return I just sit in my room on my own. I remember the thing that I used to enjoy and I have stopped doing what I enjoy, so I get frustrated. [P2] Another described how pain, and his beliefs about pain, constituted an obstacle to attempting new activities: So we have decided that I should do some sports, and, you know, gain some strength, but I am worried because when I run I am worried about the pain that will come in my knee, and so, I fear that. [P5] When pain and PTSD symptoms, in particular intrusive memories, are unpredictable, uncontrollable, and debilitating, the individual may stop planning or attempting activities that prompt them, thus narrowing choices and opportunities for recovery. One participant related how his pain was within control but the traumatic stress was not: Like for me the pain is there, it exist, the traumatic stress exist, so the pain is under my control, but the traumatic stress is not under my control, you see, so I can’t predict, I can’t say I am now controlling my trau-
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matic stress, because these images are still there, these feelings still there. [P3]
Resilience and Resources Participants talked about how social support and religious faith helped them to live with the distress and problems of persistent pain and post-traumatic stress symptoms: Now because my family is here when I am going to [psychologist], then that is much better when I am coming home because my family, they help me because they know my situation. [P1] Prayer, of course, if it didn’t help I wouldn’t continue praying. Prayer is what protects me. [P5] Participants also spoke of specific interventions that helped, but noticeably more often for post-traumatic stress symptoms or mood; few helped pain: It [relaxation] help my depression, especially when I wake up with nightmares . no, no, it doesn’t help the headaches, but it helps with the depression. [P2]
Discussion Four superordinate themes emerged from this study. There was a striking representation of pain as a combatant, pain is the enemy, in which pain was separate from the self, an assault on the body, using metaphors that often drew on torture practices. The second theme, pain and intrusive memories are connected, was represented for all but one participant as increases in pain triggered by re-experiencing of a memory, flashback, or nightmare, sometimes mediated by particular emotions, such as anxiety and sadness. The third theme, changed identity, described the contributions of pain to identity loss within the broader context of identity change and loss as a refugee and asylum seeker. The final theme, resilience and resources, captured participants’ ability to use psychological, spiritual, and social resources to cope with pain, trauma symptoms, and other challenges. The results have implications for models outlining the relationship between PTSD symptoms and pain in torture survivors.
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Relationships between pain and trauma symptoms were predominantly in the direction from trauma memories/re-experiencing to increases in existing pain. This may be explained by a shift of attention toward pain as a result of the intrusive memory,38 with pain gaining salience as attention is diverted from current activities; pain can be directly increased by negative affect via several inhibitory and facilitatory pathways.39 This is perhaps best conceptualized within dual representation theory34 because trauma memories include somatosensory and affective components.34,40 The association between pain and current distress was noted in male torture survivors by Carlsson et al.,41 and further research into this association is warranted because it has implications for treatment. Our findings also suggest a more important role for the complex and diverse meanings of persistent pain from torture, from defeat and shame at the hands of perpetrators to pride in survival and a memorial to those who died.42 Part of this meaning is exemplified by the theme pain is the enemy, reminiscent of beliefs about mental defeat23 and permanent damage.24,25 The third and fourth themes, changed identity and resilience and resources, captured wider contextual factors that also are missing from earlier models.21e23 Identity change in persistent pain,43 contingent on the interference of persistent pain with valued activities and goals, was compounded by the losses of material possessions, status, family, friends, and community that are inherent in becoming a refugee. Struggling with pain and with such identity change makes enormous demands on resources, but resilience and resources underline the importance of avoiding characterizing torture survivors as helpless.44 Descriptions were consistent with findings of social support as an important contributor to psychological adjustment and well-being among refugees,45 the importance of family and religious beliefs,46 and the protective effect of confidence in coping and support against disabling effects of persistent pain47 and PTSD.48 The themes are not incompatible with the models previously described concerning the relationship between pain and PTSD in torture survivors, but rather suggest a wider formulation including cognitive themes such as loss of self or identity, functional ability, and social
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context.49 It might be, for instance, that characterization of pain and environmental stressors mediate the relationship between pain and post-traumatic stress symptoms. Pain at the time of torture contributes to later psychological symptoms,50 and the meaning of the experience and its consequences may have a significant influence on the extent to which this occurs. We would argue that models that aspire to application to the difficulties of torture survivors need to take meaning and context into account, rather than to limit themselves to symptoms and processes of symptom production and maintenance.
Strengths and Limitations This study addressed the meanings of pain and its interconnections with symptoms of re-experiencing in greater detail than previously reported in this population. It is not unreasonable to expect different associations of pain from repeated or prolonged torture from those of pain resulting from a single major event, such as assault.36,51 One limitation is the lack of representativeness of the wider torture survivor population in treatment for PTSD, a diverse and under-researched group.52 Although a semistructured interview permitted spontaneous comment, the schedule guided participants to specific areas of experience. Questions about imagery could have enriched accounts; intrusive imagery appears to be processed differently from verbal memory, with more threat-related emotion.53 Our results, to some extent, may reflect depression, common in refugee and asylum seeker populations,41,54 and given that we focused only on re-experiencing, the avoidance and arousal clusters of PTSD remain to be explored in relation to persistent pain. A second limitation was the use of interpreters; although interviews and transcript analyses ideally use participants’ own languages, this was not possible, and restriction to fluent English speakers was clearly undesirable.42,55,56 Observing methodological considerations in using interpreters,57 losses resulting from interpretation were mitigated by using professional interpreters experienced with this population, who respected the richness of the material and explained personal and culturally specific metaphors. However, interpretation inevitably changes
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data in unquantifiable ways,10 and an interpreter is never ‘‘neutral.’’58
Clinical Implications for Working With Torture Survivors These themes highlight a number of potential threats to recovery from PTSD and pain, and to engagement with psychological interventions. The theme pain is the enemy illustrates the intensity and ferocity of the pain, underlining the importance of routinely assessing pain in torture survivors, and keeping it in mind during psychological treatment. Furthermore, the interconnection between discussing trauma and worsening pain, during or after the session with the psychologist, can be a deterrent to attending treatment. Pain may increase the risk of dropout, already high in people with PTSD symptoms; increased awareness of the physical as well as the psychological impact of talking therapies could help preparation for therapy and be monitored throughout. Currently, and despite the obligation for reparation,59 few services in Europe provide combined specialist treatment of pain and PTSD. The U.K. guidelines for PTSD60 recommend trauma-focused cognitive behavioral therapy (CBT) or eye movement desensitization and reprocessing therapy; and CBT and behavioral therapy are the most common approaches to psychological management for persistent pain, with good evidence of efficacy for pain and mood.61 There are no systematic studies of combined treatment, although some studies describe a concurrent beneficial effect of CBT treatment on PTSD symptoms and pain-related functioning62 and on pain intensity;63 others have tested efficacy and acceptability of pain treatment in traumatized refugees.21 Although results are promising, the limited improvements reported in other pain-related domains urges cautious interpretation and further large-scale research.
Future Directions This is a preliminary exploration of a relatively under-researched area, providing a basis for further enquiry. It is unclear to what extent there may be meanings of pain specific to torture; further study would enrich understanding of persistent pain in torture survivors and assist clinicians treating their pain. The dual
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representation model34 offers constructs that are most compatible with our findings, and is heuristic, but ethical considerations are particularly important in this population, the emphasis being on providing direct benefit to participants. Despite its limitations, this study has important implications for clinical practice. It suggests that both pain and PTSD are an integral part of clients’ experiences and require addressing with reference to the important contributory effects of multiple individual and social factors. This is consistent with models that propose that social and environmental stressors mediate the effect of trauma exposure on mental health.32,64
Disclosures and Acknowledgments No funding was received for this study, and the authors declare no conflicts of interest. The authors are grateful to Cathy Gingell, Clinical Psychologist, for auditing transcripts and commenting helpfully on the analysis; to the Traumatic Stress Clinic, Camden & Islington Foundation Trust, for hosting this study; and to the nine participants who took part in the interviews.
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