2019 AZEVEDO - Impaired Quality of Life of People Affected by Leprosy
2019 AZEVEDO - Impaired Quality of Life of People Affected by Leprosy
2019 AZEVEDO - Impaired Quality of Life of People Affected by Leprosy
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1Stephanie Steremberg Pires D’Azevedo, 1Danielle Christine Moura dos Santos, 1Gustavo Aires
de Arruda, 1Jaqueline Caracas Barbosa, 1Niedja Madelon Nascimento Souza
and 2Marielle de Lima Belmonte
1Nossa Senhora das Graças Nursing School. University of Pernambuco, Recife, Pernambuco, Brazil
2Federal University of Ceará. Fortaleza, Ceará, Brazil
ArticleHistory:
Article History: Objective: to analyze the quality of life of people affected by leprosy with physical disabilities
Received 08
Received xxxxxx,
th 2019 2019
September, participating in self-care support groups. Methods: descriptive study, conducted with participants
Received in
Received in revised
revised form
form from self-care support groups in leprosy (n=27), in the state of Pernambuco, Brazil. Structured
xxxxxxxx,
11th 2019
October, 2019 instruments were used, containing sociodemographic, economic and clinical information, as well
Accepted 21
Accepted xxxxxxxxx,
st
November,2019
2019 as scales for the evaluation of quality of life. Results: when approached about the impact of the
Published online
Published online 30 xxxxx,
th 2019 2019
December, limitations in their life, 89.5% of the people realized that they have a negative effect on their
quality of life. All areas seem to suffer impairment, with increasing magnitude considering
Key Words: autonomy (70.9), inclusion (63.8) and discrimination (60.1). Conclusion: High proportion of
Quality of Life; Leprosy; Self-care; people affected by leprosy presented impaired quality of life.
Physical disabilities; Mycobacterium leprae.
*Corresponidng author:
Stephanie Steremberg Pires D’Azevedo
Copyright © 2019, Stephanie Steremberg Pires D’Azevedo et al. This is an open access article distributed under the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Citation: Stephanie Steremberg Pires D’Azevedo, Danielle Christine Moura dos Santos, Gustavo Aires de Arruda et al. 2019. “Impaired quality of life
of people affected by leprosy with physical disabilities”, International Journal of Development Research, 09, (12), 32342-32345.
MATERIALS AND METHODS were male, 48.1% (n=13) were 40-59 years, followed by 60
years or more with 37.1%(n=10) and 14.8% between 20-39rs
This was a cross-sectional descriptive study with a quantitative (n=4); 59.3% (n=16) self-reported as pardos, followed by
approach. The research was carried out in the period from 29.6% (n=8) as black, 7.4% (n=2) as white and 3.7%(n=1) as
January to July 2018, in the city of Recife and Metropolitan Asians. In relation to marital status, 44.4% (n=12) of the
Region in Pernambuco, Brazil. It was performed at six health participants were married, 22.2% (n=6), unmarried, 14.8%
units of reference for the monitoring of people affected by the (n=4) were in a stable union and 18.6% (n=5) reported others.
disease and who had self-care support groups. The sampling Regarding work status, the main results were 33.3% (n=9)
process was carried out in a non-probabilistic (accessibility) were retired, 29.6% (n=8) were housewives; 11.1% (n=3)
way. Thus, initially, the sample was composed of 27 reported being unemployed. The income of 63.0% (n=17) of
participants with leprosy. The inclusion criteria were: being a the sample were 1-2 minimum wages, followed by 1 minimum
participant in one of the groups, with diagnosis of leprosy wage (18.5%, n=5), 3 or more minimum wages (11.1%, n=3)
under polychemotherapeutic treatment, treatment for leprosy and without income, 7.4% (n=2). Concerning schooling,
reaction or post-discharge, aged over 18 years and being under 48.1% (n=13) had between 4-7 years of study, 29.6% (n=8),
treatment for at least three months. There was exclusion of eight or more years of study and 22.3% (n=6) with 1-3 years of
participants with disabilities described in medical records that study. In relation to the clinical data of the participants,
prevented the understanding of the instruments applied, theme, regarding the operational classification, the predominance was
and/or the research objective. The quality of life of people the multibacillary (MB) form, which corresponded to 96.2%
affected by leprosy with physical disabilities was analyzed (n=25), followed by the paucibacillary (PB) with 3.8% (n=2).
with the World Health Organization Quality of Life In relation to clinical forms, there was predominance of
Disabilities Module (WHOQOL-dis), which represents a Virchowian and dimorphous forms, with 60.9% (n=18) and
WHOQOL-brefadditional measure, oriented to the 39.1% (n=9), respectively.
particularities of people with self-reported physical disabilities,
according to the flowchart proposed by Bredemeier (2014) and In relation to the degrees of disability, 69.6%(n=16) were
colleagues (FLECK, 2010). The analysis was performed in diagnosed with grade II and 26.1% (n=6) with the presence of
overall score and domains of quality of life. Each domain has grade I. only 4.3%(n=1) had no disability at the time of
questions that vary from one to five points. The scores were diagnosis and were evaluated with zero degree, thus showing
transformed into a scale ranging 0-100. The syntaxes proposed that more than 95.6% (n=22) of participants already had some
by the WHO (POWER, 2010) were used to calculate the degree of physical incapacity at the time of initial evaluation;
scores of the WHOQOL-dis instrument. The distribution of 14.8% (n=4) of the participants had no information on the
continuous numerical variables was analyzed using the disability grading on the medical records and were not taken
Kolmogorov-Smirnov test. The results were presented using into consideration in the statistical analysis. Of the analyzed
descriptive statistics. The Chi-square test of adherence was sample, 70.8% (n=17) presented leprosy reaction during the
used for the comparison of the frequencies observed in relation treatment or post-discharge. Regarding quality of life based on
to the expected ones. The binomial test was used for sex, the overall perception, the mean value was 64.7, standard
operational classification and leprosy reactions variables. The deviation of 16.6 points (median = 66.6; interquartile range =
significance level adopted was p<0.05.The analyses were 54.1- 75.0) for the international version of the instrument and
performed using the software IBM SPSS Statistics for for the Brazilian version, mean value of 47.9, standard
Windows, version 20 (IBM Corp., Armonk, N.Y., USA). deviation of 20.6 points (median = 50.0; interquartile range =
31.2- 62.5). When being approached about the impact of
RESULTS disabilities/limitations, through the question: "Does your
incapacity (disability/limitation) have a negative (bad) effect
The study population was composed of 27 people affected by in your life?", in relation to the previous two weeks, 89, 5% of
leprosy. In relation to their sociodemographic and economic people realized that the same has a negative effect on their
characteristics, 51.9% (n=14) were female and 48.1%(n=13) quality of life and responded that affects "very little", "more or
Table 1. Discrimination Domain of the quality of life instrument of people affected by leprosy with physical disabilities participating in
self-care support groups in Recife and metropolitan region, Pernambuco, Brazil, 2018 (n=27)
Table 3. Inclusion Domain of the quality of life instrument of people affected by leprosy with physical disabilities participating in self-
care support groups in Recife and the metropolitan region, Pernambuco, Brazil, 2018 (n=27)
Table 4. Local module: “environmental adaptations to limitations” of the Brazilian version of the quality of life instrument of people
affected by leprosy with physical disabilities participating in self-care support groups in Recife and the Metropolitan Region,
Pernambuco, Brazil, 2018 (n=27)
less" and "too much" (48.1%, 33.3% and 7.4%, respectively), coping with the disease and involves issues of body image, not
followed by the answer "not at all", with 11.2% and "totally", only in physical, but also in psychological terms. Study on
0%. In both questions, p<0.001. Table 1 above shows that stigma and leprosy showed, through the narratives of people
discrimination remains a relevant factor that can impair the affected by the disease, that the process of stigmatization
quality of life of people affected by leprosy with physical marked the history of life of these people significantly (LEITE
disabilities, restricting them socially and isolating them from et al., 2015). The people affected by leprosy with presence of
their activities. Of the participants, 66.6% reported being physical disabilities need to relearn how to live with their new
treated "unfairly" and 74.1% feel vulnerable and require body, adapting themselves to difficulties and obstacles. For
"someone to speak for them when they have a problem". Table this purpose, they need to have autonomy in relation to the
2 below addresses the Autonomy of the instrument of quality self-care process, becoming an active agent in their treatment,
of life of people affected by leprosy with physical disabilities. taking decisions that affect their health, life and psychosocial
The findings in the autonomy domain do not bring difficulties integrity (MAIA et al., 2014). When raising data related to the
perceived by participants related to the control of life (55.5% control of life, decision-making power and autonomy, the
reported having "a lot" or "total" control of their life), participants of this study showed good scores, despite the need
decision-making power (81.5%) and autonomy (70.4%). Table for someone to speak for them when they have problems and
3 provides the results of the field Inclusion of instrument of physical disabilities (95.6%). This finding may be related to
quality of life of people affected by leprosy with physical the presence of participants into self-care support groups,
disabilities. Table 4 below covers the local module that refers which stimulate the autonomy of individuals and place them as
to the "environmental adaptations to the limitations" of the protagonists in their treatment. The participants perceived their
Brazilian version of the instrument of quality of life for people quality of life with physical disabilities as impaired. These
with physical disabilities. In the studied population, 51.8% of issues provide an analysis of the feeling of participation of
the participants reported not being "satisfied" with the work people with disabilities, important in the perception of their
opportunities, but it is important to emphasize that the study quality of life (CANTORANI et al., 2015). Concerning the
sample consisted of retired participants (33.3%) and aged 40- context presented, the presence of physical disability affects
59 years (48.1%), which can corroborate these difficulties in the quality of life of people with leprosy. Physical disability
relation to labor market opportunities. Of the participants, during the course of the disease, if treated late or not treated, is
33.3% had some degree of "dissatisfaction" with their well described, but understanding the implications on the
adaptations in the environment related to their limitation ("not quality of life makes all the difference in the care with these
at all" or "very little"), as answers. The low monthly income people and comes from an expanded perspective, dealing with
(1-2 minimum wages; 63.0%; n=17) and level of schooling, issues related to this population in particular and their
48.1% (4-7 years), in this study, may be contributory factors to biopsychosocial context.
this "dissatisfaction". Furthermore, 40.8% reported few Conclusion
opportunities to study. Nevertheless, it is important to
highlight that most participants were not at school age and the A high proportion of people affected by leprosy with physical
implementation of the instrument has a temporal cutout. disabilities presented impaired quality of life, with the
autonomy, inclusion and discrimination domains as the most
DISCUSSION affected. This information can assist in the understanding of
the impact of the disease and planning by health professionals
Despite the advances related to information and treatment of involved and public policies, in addition to providing
the disease, the prejudice and stigma constitute barriers in preventive measures and health promotion.
32345 Stephanie Steremberg Pires D’Azevedo et al. Impaired quality of life of people affected by leprosy with physical disabilities
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