1 dor cronica

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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