Gonçalves, M. (2017) A video-based intergenerational approach for the destigmatisation of chronic pain, Journal of Aging & Innovation, 6 (1): 5 - 10
ARTIGO ORIGINAL/ ORIGINAL ARTICLE
ABRIL 2017
A video-based intergenerational approach for the destigmatisation of chronic pain Uma abordagem intergeracional baseada em vídeo para a destigmatização da dor crónica Un enfoque intergeneracional basado en video para la destigmatización del dolor crónico
Autores Marta Gonçalves 1 1
Instituto Universitário de Lisboa (ISCTE-IUL), Cis-IUL, Lisboa, Portugal, Harvard Medical School
Corresponding Author: marta.goncalves@iscte.pt
Abstract In Europe it is estimated that one fifth of the population suffer from chronic pain. However, it seems that society is not yet prepared to understand the people who suffer from chronic pain. To live twenty-four hours with pain and project the day according to pain is still often associated with laziness or no willing to work. In order to start in Europe a process of destigmatisation of chronic pain and better access to specialized units for this, this paper intends to discuss the potential of creating a ten-minute video about the experience of living with chronic pain. For the construction of the video "intergenerational living with chronic pain" there is a need to conduct focus groups with various informants as patients of different ages, family members, health professionals, education professionals and human resource managers. This video could be a reliable tool for further testing and use, not only in clinical practice and training of professionals, as well as of lay people. Keywords: video-based intervention, destigmatisation, chronic pain, intergenerational
Resumo Na Europa, estima-se que um quinto da população sofra de dor crónica. No entanto, parece que a sociedade ainda não está preparada para entender as pessoas que sofrem de dor crónica. Viver vinte e quatro horas com dor e projectar o dia de acordo com a dor ainda é muitas vezes associado com a preguiça ou não disposição para trabalhar. Para começar na Europa um processo de destigmatização da dor crónica e melhor acesso a unidades especializadas para isso, este artigo pretende discutir o potencial de criação de um vídeo de dez minutos sobre a experiência de viver com dor crónica. Para a construção do vídeo "vivência intergeracional com dor crónica" há necessidade de conduzir grupos focais com vários informantes como pacientes de diferentes idades, membros da família, profissionais de saúde, profissionais de educação e gestores de recursos humanos. Este vídeo pode ser uma ferramenta confiável para futuro teste e utilização, não apenas na prática clínica e formação de profissionais, bem como de leigos. Palavras-chave: intervenção baseada em vídeo, destigmatização, dor crónica JOURNAL OF AGING AND INOVATION (EM LINHA) ISSN: 2182-696X / (IMPRESSO) ISSN: 2182-6951
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Introduction
(Cohen et al, 2011), and the self-stigma,
Ten years ago, chronic pain was a major
also called internalised stigma (Hegarty &
European health care concern with almost 20%
Wall, 2014; Waugh, Byrne & Nicholas,
of European adults suffering from moderate to
2014). The social stigma associated with
severe chronic pain (Breivik et al., 2006).
chronic pain refers to negative beliefs about
Although this pain affects their social and
chronic pain by the population in general
professional quality of life, only a small part of
(Cohen et al., 2011). The social stigma often
them seeks a pain specialist and receives
reflects a lack of knowledge about chronic
adequate
different
pain, negative attitudes and discrimination
nowadays? It seems not. In order to start in
conduct. This is especially important as the
Europe a process of destigmatisation of chronic
improvement of knowledge and skills, also
pain and better access to specialized units, the
called literacy, on chronic pain, can lead not
present paper aims to discuss the creation of an
only to better results but also help to
intergenerational ten-minutes video about the
increase readiness to help seeking and
experience of living with chronic pain, which can
overcome the stigma associated with
later serve as tool to be tested in different
chronic pain. Research has shown that self-
contexts as health, education, work and social.
stigma is conceptually different from social
This work aims to simultaneously answer two
stigma (Hegarty & Wall, 2014; Waugh,
questions. On the one hand "How can we make
Byrne & Nicholas, 2014). While social
chronic pain visible so that others understand
stigma works at a social level, self-stigma is
us?" and on the other "How can we be sure that
a process at the individual level. Self-stigma
the person is not lying about chronic pain?".
occurs when people according to public
care.
Is
the
situation
stereotypes, internalize stigmatizing ideas about chronic pain and begin to believe they
Social stigma and self-stigma that
have less value than others, which can lead
accompanies it, associated with chronic
to self-devaluation, silence and loss of
pain is culturally constructed, emanating
social opportunities. Combined, the social
from social structures and knowledge,
stigma and self-stigma constitute a vicious
attitudes and behaviors of people (Chapple
cycle and an obstacle to seeking help. As a
et al., 2004; Jacoby et al., 2005; Taft et al.,
result
2009). Negative attitudes towards people
discrimination, people can choose to avoid
with chronic pain are learned early by
the stigma of not looking for institutions that
influences such as the school and the
potentiate the mark, such as pain clinics or
media.
they may be afraid of being judged as weak
Stigma
and
These
discrimination
negative
attitudes
and
behaviors affect professional help seeking
of
experienced
and
anticipated
and incompetent.
and life in community. In chronic pain there is a social stigma, also called public stigma JOURNAL OF AGING AND INOVATION (EM LINHA) ISSN: 2182-696X / (IMPRESSO) ISSN: 2182-6951
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Intergroup contact
depression. Although there is in Portugal for more 1)
than a decade a National Plan to Fight Pain and
education, 2) contact - defined as face to face
pain clinics within hospitals across the country, it
contact between members of the general public
seems that society is not yet prepared to
and people with chronic pain who are able to keep
understand people who suffer from chronic pain
their commitments to school and employment,
such
and 3) protest - the reactive strategy, for example,
fibromioalgia, back pain, neuropathy, among
protests advocacy groups in relation to inaccurate
others. It is estimated that one third of the
and hostile representations of chronic pain.
population suffer from chronic pain in Portugal,
Although in studies on mental illness (Corrigan et
not only women and the elderly, but also men and
al. 2012; Yamaguchi et al., 2013) it was found that
children. To live twenty-four hours with pain and
programs that emphasize the contact were the
project the day according to pain, as being for
most successful in improving long-term attitudes,
example not always able to climb stairs in the
concerning chronic pain no previous intervention
morning, continues to be often associated with
contact video that directly address access and
laziness or not willing to work. According to
quality of health care on chronic pain through
people living with pain it is an invisible disease
experiences reported by peers with chronic pain
("the pain is not seen, not measured, is silent, is
is known. The theoretical model of social
subjective") as it is not easy for the others to
psychology which heads the development of
realize. According to the others, how can you be
intervention proposed here is the theory of
sure that the person is not lying just to have low
intergroup contact (Allport 1954), revised by
or missing classes. There is also a strong
Pettigrew & Tropp (2006). Pettigrew & Tropp
criticism of mothers with chronic pain who can not
(2006) point out that the four contact ideal
get to lap the children or just can breastfeed lying
conditions proposed by Allport as the same status
down, not to mention the inability to perform a
between the groups in the situation, common
normal delivery. Just how great the interference
goals, cooperation between groups and legal
of chronic pain in the intimacy of a couple.
support, facilitate the reduction of prejudice but
Research over the years proved that along with
are not mandatory. This theory was tested in
the
earlier interventions that attempted to reduce the
mindfulness, mental training, meditation, self-
stigma associated with mental illness (Corrigan et
hypnosis or relaxation is extremely effective and
al., 2012; Yamaguchi et al., 2013).
in Portugal there has been a remarkable job
The
destigmatization
strategies
include
as
those
medication
with
the
rheumatoid
brain
control
arthritis,
through
towards a better doctor-patient relationship and A southern European case
communication and a better self-management of
In Portugal there are still many myths and
pain as to play chess or self-help groups. Chronic
prejudices in relation to chronic pain in the
pain is a complex phenomenon with increased
population that hinder access to health care and
and extended response to a harmful stimulus or
consequently generate suffering, disability and
response to stimuli normally not harmful, which diagnosis and subsequent intervention require
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diagnosis and subsequent intervention require
with chronic pain" it is of great relevance to
analysis
in
analyse these focus groups in terms of content
psychological and social factors in addition to
(Bardin, 2009) by Mayring reduction method
biological. There are different tools to measure
(2000) with all ethical rigor and anonymity
pain perception by the adult patients (Breivik et
guarantee in accordance with international
al., 2006;. Cleeland & Ryan, 1994; Keller et al.,
standards (American Psychological Association,
2004) as the Visual Analogue Scale ("no pain"
2002; European Federation of Psychologists'
and
the
Associations, 2005) and national standards (The
numerical rating scale with 0 = no pain and 10 =
Portuguese Psychologists, 2011). This analysis
the worst pain).
allows us to know the meaning of living with
According to the Portuguese General Directorate
chronic pain, characteristics or behaviors of best
of Health, effective pain management is a right of
living with chronic pain, offers in Europe to better
patients who suffer from it, a duty of health
live with chronic pain, biggest challenge due to
professionals and a key step in the effective
chronic pain, ideal to live better with chronic pain,
humanization of health facilities. The education of
greatest daily life need due to chronic pain and
patients
pain,
activities daily offered to people with chronic pain.
analgesic medication and self-control of pain.
This analysis can serve as basis for the movie
However, it seems that access to health care
script
remains difficult: on average, a person takes nine
significance with a unit of chronic pain.
years to reach a unit of chronic pain, largely
Discussion
because of the stigma associated. This delay
To actively contribute to a better understanding
favors the development of so-called "pain
and treatment, the aim of this paper was to
memory”, the phenomenon of persistence of pain
discuss a reliable tool for further testing and use,
after the injury is already healed.
not only in practice and clinical training of
and
respective
"maximum
pain
includes
intervention
imaginable"
self-assessment
and
of
covering
positive
experience
and
professionals, as of lay people of different ages in Intergenerational living with chronic pain
different contexts as health, education, work and
To understand perceptions and create new
social. The intervention in the stigma associated
knowledge,
and
with chronic pain through the use of video is
representations on the same subject (Gaskell,
promising as a quick and inexpensive way to
2002) to achieve the proposed objective, it is
improve access to treatment of chronic pain in
helpful in a first moment to conduct focus groups
Europe. This type of intervention, of easy and
with multiple informants with daily contact with
rapid administration in various contexts, can be
chronic pain as patients of different ages, family
used first in a pilot study and then climb up a
members,
education
randomized clinical trial a larger sample to verify
professionals and human resources managers of
that the video causal effect persists for a long
small, medium and large organizations. For the
period. Based on the differences of individualism
construction of the video "intergenerational living
and collectivism across cultures (Hofstede,
exploring
health
different
professionals,
views
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2001), the test of similarities and differences in
treatment. European journal of pain, 10(4), 287-
terms of stigma and other factors associated with
287.
seeking help for chronic pain between countries is also of great interest for a model on stigma,
Chapple, A, Ziebland, S, McPherson, A (2004).
attitudes and help-seeking intentions in several
Stigma, shame, and blame experienced by
countries.
patients with lung cancer: qualitative study. BMJ, 328: 1470- 1473.
Practical, social and research implications • Given the high percentage of people with
Cleeland,
C.S.,
Ryan,
K.
(1994)
Pain
chronic pain in Europe, coupled with the rapid
assessment: global use of the Brief Pain
change and complexity in the demographics, it is
Inventory. Ann Acad Med Singap, 23: 129-138.
essential to seek solutions through research to promote improved access and quality of care.
Cohen, M., Quintner, J., Buchanan, D., Nielsen,
• There is a need to develop training and
M., Guy, L. (2011). Stigmatization of Patients with
campaigns to combat prejudice on chronic pain
Chronic Pain: The Extinction of Empathy. Pain
created in the society.
Medicine,
•
Only
through
a
multi-informant
and
12(11):
1637–1643.
DOI:
10.1111/j.1526-4637.2011.01264.x
interdisciplinary approach it is possible to create opportunities and support for citizens to enable
Corrigan, P.W., Morris, S.B., Michaels, P. J.,
them to live with quality of life still suffering from
Rafacz, J.D. & Rüsch, N. (2012). Challenging the
chronic pain.
public stigma of mental illness: A meta-analysis of outcome studies. Psychiatric Services, 63,
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