Chronic pain portrait: pain perception through the eyes of sufferers*
Adrianna Loduca1,2, Barbara Maria Müller2, Roberta Amaral2, Andrea Cristina Matheus da Silveira Souza2,4, Alessandra Spedo Focosi1,2, Claudio Samuelian2, Lin Tchia Yeng2,3, Marcia Batista1
*Received from Pontificia Universidade Católica de São Paulo, São Paulo, SP, Brazil.
BACKGROUND AND AIMS: The literature mentions several factors influencing the onset or maintenance of chronic pain; however, it is known that such aspects cannot be generalized and universalized because studies indicate that socio-cultural differences interfere with pain perception. This study aimed at characterizing the perception of pain by patients and associated suffering, employing the projective tool Portrait of Pain.
METHODS: This is an exploratory study with 150 patients with different chronic pains. They were evaluated according to socio-demographic variables related to pain, and beliefs about pain/suffering and proposed treatment (application of the Portrait of Pain). Information obtained from the Portrait of Pain was analyzed by the content analysis method. A single meeting was scheduled with mean duration of 60 minutes.
RESULTS: The study was made up of 64% of females, mean age of 52.5 years, 46% were married and 46% had not completed high school. Mean pain duration was 6 years (58%). Drawings were grouped in 8 categories (scenes, monsters, objects, geometric shapes, irregular shapes and scribbles, whole human body, parts of the body and miscellaneous), evidencing that half of the subjects associated current suffering to other events with emotional impact and 87% expected to improve with passive strategies.
CONCLUSION: There are few reports on the use of projective tools to evaluate and manage chronic pain. Results suggest that this resource could help characterize the meaning of pain in patients’ lives and favor adhesion to a proposed treatment. Further studies should be conducted to deepen the theme.
Keywords: Chronic pain, Evaluation of impact on health, Projective tool, Psychological evaluation.
Chronic pain causes impact in life in several aspects: physical, psychological and emotional, which are often hard to adjust to and jeopardize many areas of life1-10. These impacts result in uncertainty, fears, concerns and sensation of incapability11-13. Thus, permanence of pain compromises the life of sufferers as a whole.
When pain persists, despite therapeutic efforts, health-care professionals share feelings of frustration with the sufferer, especially because they cannot anticipate a cure. Attention must be drawn to help them and adjust to the resulting incapability and adverse side effects of medications14, 15, which if used excessively and for an extended period, can provoke reduction of endorphin by the organism (pain blockers), therefore increasing the perception of pain16. In this sense, understanding how each patient views the impact of chronic pain in their livse constitutes a fundamental tool in the effectiveness of the treatment proposed by the multi or interdisciplinary staff.
Literature in the field shows studies that demonstrate that culture can potentially interfere in the experience of pain, both in the perspective of the patient and the assistance provider, in several aspects of day-to-day life. Each given meaning is the result of the influence of ideologies on health, quality of life and socioeconomic status17, 18. It is noticed that the expression of suffering is constituted by the sum of physical, emotional and social factors; therefore it cannot be translated into mere frequency quantification and pain intensity19. The differences between ethnic and cultural groups show differences in language and meanings related to the symptoms, making room for the need of creation and validation of local surveys20, 21.
Professionals working in Pain Centers in Brazil have been looking to validate international instruments, but have also identified, just as reported in worldwide literature, the need to develop new tools that meet the work demands of our staff and the reality of the Brazilian population. In that perspective, in 1998, a study was undertaken in which a projective instrument called Portrait of Pain was developed. At that time, it was observed that patients that had the same pain diagnosis not necessarily gave the same meaning to their pain, which prompted the development of a tool which required patients to make a graphical representation of their physical discomfort, followed by a survey which favored the understanding of the meaning of pain in the patient’s life. Since 2000, according to this study12, a group of researchers have adopted the Portrait of Pain as one of the reference tools for psychological evaluation of patients in admission at the IOT HCFMUSP’s Pain Group.
While in Brazil the attention was drawn to the narrative and meaning each patient gave to their pain, at around 2008, a movement developed by European countries showing concern about the patients’ narrative and graphical expression of pain called PainSTORY emerged. Thirteen European countries collaborated with the research, which collected data from 294 patients, during a year, aimed at verifying the impact of chronic pain in patients’ lives. The results of PainSTORY showed that pain had different meanings in patients’ lives, emphasizing the importance of valuing individual speech and the wealth of utilizing other forms of expressing pain, like graphical production22.
In 2010, a group of psychologists, in partnership with a pharmaceutical industry, developed a booklet on Pain Portraits in order to show professionals that the meaning of pain for each patient was not restricted to clinical diagnosis. The current study started at that time and is now finished with the analysis of 150 Pain Portraits under different aspects.
Few reports are found in the international literature reporting use of projective tools in psychological studies on evaluation and treatment of chronic pain. Among those found, projective instruments already existing in the field of Psychology were utilized, like the MMPI (Minessota Multiphasic Personality Inventory), the Rorchasch, the Thematic Apperception Test (TAT) and the Human Figure Drawing (DFH)23,24. There is a gap regarding development of projective tools to facilitate evaluation of people with chronic pain. These findings show the need for more resources to be used in the field of pain that allow patients to express their suffering more freely and creatively. Projective techniques demand the individual to utilize characteristics of their
personality, needs and life experiences to interpret ambiguous stimuli, which reduces the action of defense mechanisms and allows access to contents not accessible to the collaborator’s conscience25.
The goal of this study was to characterize the patient’s perception of their own pain and associated suffering, applying the projective tool Pain Portrait.
This is an exploratory study26 with 150 diverse etiology chronic pain patients selected by the Pain Group at the University of São Paulo’s Medical School Orthopedics and Traumatology Institute, in partnership with Pontifícia Universidade Católica de São Paulo. Patients invited to participate consisted of those whose treatment in the ward started between January 2010 and July 2013. The existence of significant cognitive deficit and/or severe psychiatric disorders were exclusion criteria, as well as refusal to participate by the subject.
Investigation started from three groups of variables: social demographic (age, gender and civil state), pain related (time living with pain, numeric pain scale) and beliefs regarding pain and multidisciplinary treatment (Pain Portrait application). A single meeting took place with an average duration of 60 minutes.
Information obtained with Pain Portrait application was analyzed according to the content analysis method27. Initially, a fluctuating reading of the material was conducted to raise themes and categories. Afterwards, narrative coding researchers looked to understand possibly emerging meanings from the subjects’ responses. Percentage usage came to illustrate response frequency; therefore, a statistical procedure was not conducted once the focus was aimed at broadening knowledge on the meaning of pain, describing the impact and living with their chronic pain, which motivated the presence of a larger number of subjects26.
Numeric pain scale (EN): indicates sensitive quality of pain experience28. Patient is prompted to rank the intensity of their pain according to numbers ranging from zero to 10 (or zero to 100), where zero means “no pain” and 10 “most painful”.
Pain Portrait: projective tool11,12,29 whose goal is to indicate the patient’s perception of pain and associated suffering. Subject is prompted to imagine their pain has a shape and try to draw it on a sheet of paper. Colored pencils, #2 pencils and colored pens are offered. Subject is reminded that there isn’t right or wrong. After the drawing is made, a survey comprised of seven questions follows, looking to broaden the understanding of algic suffering.
The Pontifícia Universidade Católica de São Paulo’s Ethics Committee approved this study, under no 118/2005.
There was a predominance of women (64%) and mean age was 52.5 years, with a prevalence of age from 31 to 55 (61% of participants); 46% were married and 46% had not completed high school. Regarding the time living with pain, the majority (58%) averaged six years and pain intensity was around 7.75.
Portrait analysis enabled paintings to be split into eight categories: scenes, monsters, objects, geometric shapes, irregular shapes and scribbles, whole human body, parts of human body and miscellaneous. Aside from graphic representations, the predominant use of some colors is observed: most use few colors, black and gray being prevalent (70%), and when different colors were used, red, brown and yellow stood out, used together with black and gray; the presence of green and blue was sparse.
Regarding the survey, the names patients gave to their pain were split into three groups: physical, emotional and mixed. Few patients (4%) referred to mere emotional aspects (hope, fright, fear, concern, longing). The majority, around 67%, named their pain with adjectives and nouns that included physical discomfort and unpleasant emotions (snake, damned pain, rollercoaster, boomerang) and 29% brought up sensorial aspects (throbbing, hammering, shooting, burning). As for age of pain, 44% of patients gave the drawing ages that matched the time of living with pain, while 30% gave ages superior to its emergence. When
asked about living with pain, the predominant answer (44.8%) was bad (terrible, horrible or awful).
Regarding beliefs on what could improve discomfort, 85% referred to passive attitudes, which means they considered that only external interferences, like medication or health-care professional assistance, especially a doctor, could improve their situation:
- 40%: only doctors and medication could reduce their pain;
- 19%: interdisciplinary staff or proposed treatment could change the situation, but patient did not think they could contribute to this process;
- 17%: did not believe anybody or anything could treat their pain;
- 9%: Considered God to be the only possibility to achieve the “miracle of cure”.
When asked if pain could be associated with other situations as bad or worse than living with pain:
- 50% associated pain with other impacting emotional events, especially mourning and loss-related: 66% death of loved ones and 22% relationship issues (cheating and breakups);
- 24% mentioned events of physical impact: memories of other pains or acute and chronic diseases;
- 17% claimed their pain was the worst event in their lives.