The Live Experience of People with Leprosy

A Systematic Review of Qualitative Evidence

Yudisa Diaz Lutfi Sandi, Tintin Sukartini and Ferry Efendi

Faculty of Nursing Universitas Airlangga, Kampus C Mulyorejo, Surabaya, Indonesia

Keywords: Leprosy, Live Experience.

Abstract: Leprosy is a disease caused by Mycobacterium leprae which affects the peripheral nerves. Until recently,

there are few studies explore the lived experience of people with leprosy. In this study, the authors peer review

relevant literature in numerous data. This systematic review was a patent synthesis of a qualitative study. Data

collected with predefined keywords. The database used in this study were Scopus Medline, ProQuest,

Elsevier, Science Direct, CINAHL, JSTOR, Sage Journal, Wiley Online Library, Springer Link, EBSCO

Host, and Oxford Academic Journal. There are 15 studies included, consist of 12 qualitative studies and 3

mixed method studies. The main theme which often appears in each study identified as an understanding of

leprosy, physical, health, psychological, stigma, social relation, economics, and activity. Aspects various

studies showed multi aspect of lived experience among people with leprosy. Which is collected and served,

that shows a diversity of life from people with leprosy. Addressing physics, psychological, social, economics,

spiritual and environment would be a benefit to assist people with leprosy living on their daily life.

1 BACKGROUND

Leprosy or Morbus Hansen is a disease caused by

Mycobacterium leprae (Bhat and Prakash, 2012).

Leprosy is a chronic infectious disease that attacks

nerves characterized by granulation, patches on the

skin and visual impairment (Rodrigues, 2011). This

disease has infected hundreds of thousands of people

in each year (WHO, 2012). Infection transmission is

most likely believed through nasal droplets and

mouth droplets during close and frequent contact

(Elamin, Stehr and Singh, 2012; MA et al., 2012).

Often in some cases found to be slowly detected

resulting in unintended adverse effects of leprosy

(Abedi, Javadi and Naji, 2013)

Over the last decade's leprosy control efforts have

focused on disease healing, infection control, and

disability prevention, the reported global elimination

report has improved with decreasing leprosy (Price,

2017).

Disability caused by leprosy disrupts the

functioning of the body, the individual, and the public

relations, as experienced by individuals with

disabilities (Van Brakel et al., 2012; Chingu, Duncan

and Amosun, 2013). The physical impairment suffer

is nerve damage caused by chronic granulomatous

inflammation (Wilder-Smith and Van Brakel, 2008).

Live Experience of leprosy people needs to be

explored to understand their meaning of life.

Impairment of certain parts of the body can lead to an

inability to engage in activities involving use, eyes,

hands, feet, and limitations in social participation

(Brandsma and Van Brakel, 2003). In fact, late

diagnosis of leprosy leads to permanent disability

disorders requiring sustainable self-care (Wilder-

Smith and Van Brakel, 2008).

Table 1: WHO 2016 global leprosy update (World Health

Organization, 2017).

WHO Region

Number of new cases detected

2014

2015

2016

Africa

18.597

20.004

19.384

Amerika

33.789

28.806

27.356

Eastern

Mediterranean

2.342

2.167

2.834

South-East Asia

154.834

156.118

161.263

Western Pacific

4.337

3.645

3.914

Europe

Global Total

213.899

210.740

214.783

In addition to physical disturbance and activity

limitations, people with leprosy tend to experience

social stigma and discrimination that causes

economic hardship (Ebenso et al., 2007; Dijkstra,

Brakel and Elteren, 2017). The other problems faced

by people with leprosy from the psychosocial aspect

Sandi, Y., Sukartini, T. and Efendi, F.

The Live Experience of People with Leprosy.

DOI: 10.5220/0008322101610173

In Proceedings of the 9th Inter national Nursing Conference (INC 2018), pages 161-173

ISBN: 978-989-758-336-0

161

are challenging for the individual, the emergence of

stigma, limitation in the participation of the

community, the decrease in social interaction, the

economic difficulties due to restrictions on activity

due to disability, and the inability to keep the job

(Heijnders, 2004; Rafferty, 2005; Santos et al., 2015;

Del’arco et al., 2016). Stigma is not a new

phenomenon in the problem of people with leprosy,

but the form of self-stigma such as shame and

decrease in self-esteem or even public stigma such as

public prejudices associated with restrictions and

discrimination in social participation (Reeder and

Pryor, 2008; Weiss, 2008). This is supported by the

finding that the symptoms associated with decreasing

quality of life of people with leprosy, behaviour

psychosocial worse and identified that daily activities

are indicators that indicate significant value to the

quality of life of health aspects for people with

leprosy (Costa et al., 2012; Singh, 2012; Lusli et al.,

2016).

Other negative effects have an impact on the point

of view of social identity. Social identities are the

individual’s knowledge that they belong to a

particular social group, in addition to personal

interests and emotional attachment to being a part of

a particular group (Taipel, 1978; Turner, 1999). Many

factors influence a person's ability to achieve goals to

overcome problems experienced, for example,

diseases that are considered something that

"interferes with life" can affect the individual

response associated with the disease. The ability to

accept the illness and the changes that arise in the

social life of people with leprosy, as well as the

strategies employed by individuals by doing mental

exercises to help complete tasks during treatment can

affect to individual expectations (Debats, 1996). It is

important to understand that the individual's social

identity tends to be strongly related to mental well-

being defined as satisfaction, optimism and purpose

in life, ability to control, control, possess, and feel

social support and public expectations of hope for

help in overcoming suffering and expectations related

to social identity meaningful people, activities, and

accomplishments (Mace et al., 2014)

The purpose of this systematic review study is to

synthesize the qualitative literature relating to the life

experiences of people with leprosy. This synthesis

will provide reinforcement, theoretical saturation, the

main theme that emerges. Many qualitative studies of

the life experiences of people with leprosy have not

yet collected, reviewed, and synthesized existing

evidence in a semantic way. To date, a thorough and

rigorous review not only understands how people

with leprosy live everyday life but also assess the

feasibility of the literature and find gaps in future

understanding and research with respect to the

phenomenon. The purpose of this study is to combine

and synthesize qualitative evidence based on the life

experiences of people with daily leprosy and how

people with leprosy dealing life. The main question

of this study: how is the life experience of people with

leprosy in living their lives-day-to-day?

2 METHODS

2.1 Design

The design of this study is a systematic review of

Qualitative of Evidence formulated to collect the

relevant qualitative studies and comprehensive

analysis. Guidelines on the systematic study of this

review by using guidance Joanna Briggs Institute as

Qualitative Systematic Review (The Joanna Briggs

Institute, 2014). Joanna Briggs Institute's method

guides the making as a guide to the process of article

selection, search strategy, eligibility criteria, and

information from data analysis. The synthesis of

qualitative research provides a comprehensive

perspective on the understanding and knowledge that

exists in a particular area to guide evidence-based

practice and identify gaps in a study (Sandelowski,

Barroso and Voils, 2007). Systematic reviews can

help to provide information and a fair overall

impression of the themes highlighted in the literature

and show gaps or recommendations for future

research.

Table 2: Eligibility criteria.

Criteria

Inclusion

Exclusion

Study

Design

Qualitative Approach

Mixed Method

Quantitative

Approach

Concept

Live Experience

psychiatric

Population

People with leprosy

Health

worker

associated

with leprosy

(e.g. nurse,

doctor,

social

worker)

Context

Adult in Health

Service/Community

Neonatal

Paediatric

Mental

disorder

Language

English (*min.

Abstract)

Full text

without

Abstract on

English

Date range

≥ 2007- 2017

< 2007

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research

162

2.2 Inclusion and Exclusion Criteria

Departing from the qualitative evidence then set

inclusion and exclusion criteria that focus on

qualitative method approach as needed which

includes specificity in qualitative research or research

mixed methods. In the mixed method, research uses

only part of the qualitative approach that exists and

depends on the decryption of qualitative methodology

and excerpts from the support participants in the

study. Eligible studies that describe life experiences

directly related to leprosy. Language eligibility

criteria with minimal abstract language criteria using

English. Publications considered tracing from 2007-

2017 and under 2007 are excluded. Further inclusion

group criteria are groups with adult category

participants and are not limited to gender. Neonatal,

children and mental disorders are excluded

2.3 Search Strategy

A systematic search of electronic databases begins on

September 12, 2017, by determining the feasibility of

repeated confirmation on professional scientist. This

study was conducted in accordance with the

guidelines Critical Appraisal Skills Programme

(CASP) which relates to the qualitative assessment of

the evidence. The first step: we search the electronic

database Scopus, Medline, ProQuest, Elsevier,

Science Direct, CINAHL, JSTOR, Sage Journal,

Wiley Online Library, Springer Link, EBSCO Host,

and Oxford Academic Journal to identify key articles

and identify keywords by adjusting the main

concepts: 1. People with leprosy, 2. Life experience

3. Qualitative Study. Our keywords search for both

quotes and full articles, including title, abstract, text,

and references information. The second step,

translating keywords in English to search relevant

articles in electronic databases. The third step, do a

filter using CASP to determine the article that

overpass for further review according to the topic.

The complete search strategy is limited to the last 11

years between 2007 and 2017.

2.4 Study Selection

Three levels of screening are used to remove

duplicate titles, abstracts, and citations. First, 3

reviewers (YD, TS, and EF) filter all data that

relevance based on the contents of the articles. The

second level, the full text of all articles retained after

first-degree screening is appraisal independent of

relevance by three reviewers. Consensus meetings

were held to ensure eligibility after several quality

assessment review options are completed before data

extraction.

2.5 Quality Appraisal

Quality assessment of articles to be review using the

Critical Appraisal Skills Program (CASP) special

qualitative study tool. There are 10 different

questions that consider the results of qualitative

studies, the validity of studies, and usability (Critical

Appraisal Skills Program, 2013). CASP helps

reviewers to systematically check whether a study

meets the criteria in the 10 questions by choosing

"yes", "no" or "not now" from each question. Each

document is rated independently by 3 reviewers (YD,

TS, and EF). The existing assessments are combined

with other reviewers in one file and if there is any

disagreement among the dining reviewers it will be

completed in the next discussion phase. The

allocation of scores on a scale of 10 for each reviewed

article is based on how many "yes" answers in the

scores and yes scores above 7 or more refers to

excellent article quality. The purpose of this quality

assessment is not to distinguish between qualities but

in a systematic process and standardized processes

can provide high-quality reviews based on existing

topics.

2.6 Data Extraction

The reviewed data are continued to see the expression

of the experience of people with leprosy in living their

daily lives. Each study has been read at least 3 times

before data extraction to ensure a thorough

understanding of the content. The following steps:

1) Identify studies using relevant databases by using

additional characteristics of keyword studies:

authors, publication year, study design, study

types and sample characteristics

2) Use the terms of inclusion and exclusion criteria

to filter the study and narrow the focus

3) Independently extract data on research

characteristics (reference details, population,

determination, objectives or study objectives,

methodologies, methods of data collection and

analysis)

4) The reported findings include major themes and

subthemes, including author descriptions and

labels, and all illustrated excerpts

Data extraction protocol in the final stages by

collecting data extraction results from 3 reviewers

(YD, TS, and EF) to compare data extraction and

discuss if there is a difference. The differences appear

in the review together by using the full article.

The Live Experience of People with Leprosy

163

3 RESULTS

A search strategy is performed by generating a total

of 393 citations, which remove 257 duplicates. 216

existing literature is removed during first screening

because the title and / or abstract is not in accordance

with specified eligibility criteria. 51 full article of

second stage screening of the 12 articles obtained is

maintained for review. Three additional articles are

obtained from the reference screening stage and thus

the final series includes 15 articles about the

experience of people with leprosy.

3.1 Quality Appraisal

The assessment of the quality of this study using the

Critical Appraisal Skills Program, the quality of the

15 articles scored very well, with scores equal to or

higher than 7 (scale 10). In the existing research meet

some of the requirements of the CASP tool.

3.2 Study Characteristics

A number of 15 studies reviewed in 2007-2017 were

conducted in 12 countries: Indonesia, Brasil, India,

Uganda, South Korea, Iran, Pakistan, Nepal, Nigeria,

Malaysia, Japan and Ghana. Qualitative research

methods include phenomenology, FGD,

retrospective, narrative descriptive, explanatory

model, qualitative on mixed methods. There is no

limit on gender aspect, education, marital status,

economy, etc.

3.3 Result of Synthesis

The literature search identifies 15 journals describing

individual experiences with leprosy. Finally, 8

findings of the main theme of the synthesis results are

done in summarized in Appendix 3: Understanding of

Leprosy, Experience of Physic, Experience of Health,

Experience of Psychology, Experience of Stigma,

Experience of Social, Experience of Economic, and

Experience of Activity.

3.4 Understanding of Leprosy

Lack of education and some participants never

experience of formal education of their understanding

of leprosy is a disease of God. Leprosy disease

because of heredity and easily transmitted to the

surroundings. Diseases due to curses and dirty words

Diseases of the skin, joints, nerves and eyes (Ebenso

et al., 2007; Schuller et al., 2010; Van’T Noordende,

2016). Argues that leprosy causes deformity and

disability. Leprosy can heal and nothing more than

skin diseases.(Singh et al., 2013). Starting from

allergies, minor injuries but if not treated will become

more severe (Susanto et al., 2017)

The participant’s opinion, leprosy is a different

type of leprosy and is associated with diabetes.

Assume that leprosy is exactly the same as diabetes

mellitus and leprosy is transmitted by couples who

have diabetes (Peters et al., 2013; Charles-Damte,

2016) Transmission of leprosy is considered by

individuals because by air, handshakes, eating

together, touching, descendants, breastfeeding, and

using things used by people with leprosy (Peters et

al., 2013).

3.5 Experience of Physic

Individuals with leprosy report that they have painful

experiences with symptoms before treatment,

symptoms after treatment of dark skin, skin rashes,

physical deformities and disabilities (Peters et al.,

2013; Lusli et al., 2015). The presence of body image

disturbances and symptoms that arise from diseases

such as the onset of nodules, lost toes, hand

contractures, eyebrow loss, and certain progressive

symptoms and complications that result from

prolonged physical and prolong illness (Singh, 2012;

Yang, 2014). While the aggravating factors of the

disease are when not continuing treatment or after

giving birth (Raphael et al., 2017)

People with leprosy hide the disease because of

most of the damage, and disability to the body so that

the need for tools to help the function of the missing

limb (Adhikari, 2013). Physical disability and

physical contractures caused by leprosy reactions that

occur in more than 50% of patients with leprosy MB.

The MDT consumes effects on weight gain, hair loss,

acne, swollen face, and diabetes (Sillo et al., 2016).

People with leprosy in their body parts leave behind

the residual form of disability or scar (Dako-Gyeke et

al., 2017). The reactions of leprosy include loss of

taste sensation, injury, deformity, and disability

(Yirga, 2016). Individuals find it difficult to meet

sexual needs due to constrained disabilities (Van’T

Noordende et al., 2016). Working hard becomes A

problem (Schuller et al., 2010), add with the problem

of deformity they experience because of the growing

issue of leprosy itself (Charles-Damte, 2016).

Conduct self-care during illness and do exercises to

reduce disability and further nerve damage (Susanto

et al, 2017)

3.6 Experience of Health

Professional Health workers do not provide clear

information related to leprosy to patients Some health

workers simply convey that the disease is a common

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research

164

skin disease whose treatment is free of charge (Peters

et al., 2013). Access to health services has little

difficulty or obstacles, they have difficulty in terms of

payment, and sometimes get a rejection from health

workers (Dako-Gyeke et al., 2017). Intensive

treatment provides such as medication management

and rehabilitation management (Yang, 2014). Giving

MDT consume gives side effects that make hair fall

out, and unwell (Sillo et al., 2016). The aggravating

factor of the disease is when not continuing treatment.

Individuals say that those who stop for 1 month at the

time of treatment experience loss of fingers (Raphael

et al., 2017)

The ability of self-care during illness and doing

exercises to reduce disability and further nerve

damage with self-care group approach (Susanto., et al

2017). The majority of cases, the group suggested

traditional treatment with a massage using herbal oils

and creams. Treatment at home and away from health

facilities (Abedi et al., 2013; Singh et al., 2013).

Selection of alternative medicine, spiritual and

traditional, and participants joined in self-care group.

Counselling about the use of personal protective

equipment preventive efforts to avoid accidents

caused by loss sensation in the fingers (Yirga, 2016).

Health aspects experienced never get attention so that

treatment is lived alone without sufficient attention

(Van’T Noordende et al., 2016). Women with

disabilities have serious problems in obtaining health

services, due to long distances and poor road access

and inability to use vehicles (Schuller et al., 2010;

Charles-Damte, 2016)

3.7 Experience of Psychology

The disease is a great impact on emotions, feelings of

shame, denial, anxiety, depression, sadness, feel

unloved so they are inferior (Charles-Damte, 2016;

Yirga, 2016; Dako-Gyeke et al, 2017). Thus, feelings

of shame and being quiet when meeting with people

who are not known so that the impact on

psychological conditions, feel ashamed if living with

family (Schuller et al., 2010).

Fear and worried of the patient on the

transmission of infection caused by perception and

stigma that arise (Sillo et al., 2016; Van’T

Noordende et al., 2016). They also feel dirty and hide

from people around by confining themselves at home.

All participants said they felt pessimistic, lacking

motivation, they did not know what to do next (Lusli

et al., 2015). The presence of fear is expressed with

concern and tries to distance, and fears when

expelled, restricted, and rejected from society

(Adhikari et al., 2013). The interaction between self-

isolation and isolation by the community makes

people with leprosy feel shy and quiet in the same

time and some family members also do the same to

the individual (Peters et al., 2013).

Unlike psychosocial, some people consider the

hospital as a quiet and safe place because of the

persecution they live during the community (Raphael

et al., 2017)Feelings of comfort is felt and felt the

same as others, by gaining a friendly experience of

nursing services and other patients. Patient

satisfaction because not required must cover the

defect suffered. And the existence of Conflict and

hatred with previous family members so that arises

feelings of guilt about the pain that must be

experienced by his family. Because of blame, both

parents because of illness suffer during this time

(Yang, 2014)

During participating in self-care forums,

discussing the issues or problems felt related to

leprosy, sometimes something entertaining can

reduce stress (Susanto et al., 2017)After these

diseases are treated, they feel the power that comes

from their spiritual beliefs, so that respondents feel

able to deal with various situations and conditions

that exist (Peters et al., 2013).

3.8 Experience of Stigma

The experience of stigma in people with leprosy who

have disabilities affects negative effects on their

emotions, thoughts, behaviours, and relationships.

Many individuals with leprosy get experiences

related to stigma and discrimination while interacting

with others. Some people including family, friends

and the neighbourhood begin to ignore them since

they learned they had the disease (Dako-Gyeke et al,

2017). The phenomenon of stigma is the most

common and frequent context (Lusli et al., 2015).

Individuals with leprosy conceal illness suffering

from family, neighbours, and friends to avoid

discrimination and environmental stigma around

(Peters et al., 2013; Sillo et al., 2016). The reason for

the low self-esteem is because of fear of

discrimination and separation from around. People

hate leprosy for fear of transmission of this disease so

that individuals with leprosy move to seek support

(Adhikari et al., 2013; Yirga, 2016). Public opinion

and label that leprosy is worst (Singh et al., 2013;

Charles-Damte, 2016). sometimes the family

members who initiate the stigma are present in the

form of not wanting them to be in the community,

some people avoid, and the reluctance of a partner in

sexual intercourse (Ebenso et al., 2007; Van’T

Noordende et al., 2016).

Lack of knowledge of the disease so that causes

the separation to make by the family for fear of

contracting leprosy such as separating cutlery,

separating clothes they wear, and their beds. A

The Live Experience of People with Leprosy

165

difficulty getting married because people think that

leprosy is a hereditary disease (Schuller et al., 2010)

In contrast to the existing studies in hospitals that

show that feeling safe while in the hospital because

the community feels the persecution (Raphael et al.,

2017). Therefore, there are no rules that restrict the

patient to cover the defect suffered and the absence of

stigma that exists because the community majority

has the same fate as each other (Yang, 2014).

3.9 Experience of Social

When knowing suffering from leprosy, individuals

with feelings lose the meaning of support from their

families and often lose the respect of the community

and lost self-esteem. Some patient patients feel that

their family does not support, makes sense of solitude

and causes big problems and is not appreciated by the

(Abedi et al, 2013; Adhikari et al., 2013). The

presence of barriers between existing communities

and the simultaneous rejection they feel due to skin

rashes, physical deformity, and visual impairment.

After suffering from restriction leprosy or

intercourse, the rejection and verbal violence from

family, friends, society and the environment become

disturbed (Ebenso et al., 2007; Sillo et al., 2016;

Van’T Noordende et al., 2016; Dako-Gyeke et al,

2017). In everyday social life is aware of the stigma

that comes when they try to build social relationships.

People affected by leprosy mention that their social

relationships are often limited to the medical context,

ie with patients and health professionals (Lusli et al.,

2015). Not involved in social activities and divorced

by a healthy partner and difficulty in finding a life

partner (Schuller et al., 2010; Yirga, 2016).

Individuals say after their husbands know that the

wife has leprosy, the husband then divorces her.

Another participant said that his wife refuses to sex

with her leprous husband. While other participants

got expelled from school, even some of them feel the

persecution from the community (Raphael et al.,

2017). Another participant reported that she was

married after she suffered from leprosy. Feel treated

well when there are social gathering activities, and get

the attention of the community (Raphael et al., 2017)

Contrary to the attitude of the in-laws who tend to

always support. Public relations are less good because

of knowing the illness in suffering (Charles-Damte,

2016)

Join in self-care group of individuals with leprosy

get support from family during treatment and can

return to work after recovery process (Susanto et al,

2017). Hospice care Experiencing a long and

permanent separation from the family, due to

isolation at the hospital and getting a new family

(Yang, 2014). Interact with the family through

discussions about the problems experienced (Singh et

al., 2013)

3.10 Experience of Economic

Most of the people with leprosy experience financial-

related concerns encountered plus problems such as

discrimination, isolation and restrictions due to

disability that will arise that makes the economy

burdened. (Adhikari, 2013; Charles-Damte, 2016;

Lusli et al., 2015). Stigma and Disability affect the

difficulty of job search, resulting in the inability to

provide income and just be a caretaker at home

(Schuller et al., 2010; Sillo et al., 2016). They are

rejection in communities with food-related jobs

where community group leaders believe that leprosy

can infect through feeding or drinking (Peters et al.,

2013). The impact of leprosy on productivity and

educational problems that exacerbate in obtaining

employment leading to poverty (Dako-Gyeke et al,

2017; Yirga, 2016). Economic burdens caused by

poverty, poor lives, and feelings of burden coupled

with high financing, they lose their jobs and thus have

no income. One participant says that no one wants to

accept people with leprosy to work so they have no

job, no income, and feel disappointed (Abedi, 2013).

In addition to the financial burden that must be

obtained when undergoing treatment process for

health insurance into the hospital as well as a lot of

time is wasted because of the long treatment period

(Raphael et al., 2017; Singh et al, 2013). Compliance

with treatment results in a good recovery process and

is re-employed after the recovery process (Susanto et

al, 2017). Some participants receive social

empowerment-related empowerment that the

financial improvements gain after obtaining socio-

economic rehabilitation both from local service

through microcredit and skills upgrading (Ebenso et

al., 2007)

3.11 Experience of Activity

Experience of active individuals with leprosy.

Activity and productivity decreases due to disability

(Yirga, 2016). The disability that makes the tough job

becomes a problem. Not involving people with

leprosy participating in an event and being treated

differently than healthy people (Schuller et al., 2010).

Proteases are needed to walk on people with leprosy

who have disabilities (Adhikari et al., 2013). Sexual

activity is disturbed by the disability they have so that

their partners are reluctant to contact and the side

effects of steroid drug (Sillo et al., 2016).

Missing a jobs make routine work activities that

are now much different, some are dropping out of

school because of having long-term vision problems

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166

cause grief and low motivation for social activities

(Peters et al., 2013; Van’T Noordende et al., 2016;

Dako-Gyeke et al, 2017). Sometimes individuals get

a good situation to use their capabilities. Participants

demonstrated a strong desire to meet their needs such

as getting food, medicine, and work. The rest of the

people with disabilities have the power to try to

access to work or in the development of their business

(Lusli et al., 2015)

A participant married after he suffered leprosy.

Being treated during social gatherings, and getting the

attention of the community (Raphael et al., 2017).

The scope of hospital Sorok for example, the

obstacles experienced in life in the community, the

anticipation of vasectomy for married, forced

abortion during pregnancy occurs, and the importance

of having religion to continue the life of the

community (Yang, 2014). Associated with activities

include: Home activities take care of themselves

during illness and do exercises to reduce disability

and further nerve damage (Susanto et al, 2017);

Ability activity that is able to do renovation of house

(Ebenso et al., 2007); Discuss with family-related

problems perceived (Singh et al., 2013)

Table 3: Quality appraisal of studies with CASP tools.

Title,

Autho

rs, &

Time

Was

there a

clear

statem

ent of

the

aims

of the

resear

ch?

Is a

qualitat

ive

method

ology

appropr

iate?

Was the

research

design

appropr

iate to

address

the

aims of

the

research

Was

the

recruit

ment

strateg

approp

riate to

the

aims of

the

researc

Were

the

data

collect

ed in a

way

that

address

ed the

researc

issue?

Has the

relationshi

p between

researcher

and

participant

s been

adequately

considered

Have

ethica

issues

been

taken

into

consid

eratio

Was

the

data

analy

sis

suffic

iently

rigoro

us?

there

clear

state

ment

findi

ngs?

How

valua

ble is

the

resea

rch?

Peters

et al.,

2013

√

Abedi,

2013

√

Lusli

et al.,

2015

√

Yang,

2014

√

Rapha

el et

al.,

2017

√

Adhik

ari,

2013

√

Schull

er et

al.,

2010

√

Susant

o et al,

2017

√

Dako-

Gyeke

et al,

2017

√

Sillo

et al.,

2016

√

The Live Experience of People with Leprosy

167

Ebens

o et

al.,

2007

√

Van’T

Noord

ende

et al.,

2016

√

Yirga,

2016

√

Singh

et al,

2013

√

Charle

Damte

, 2016

√

Table 4: Summary of studies and study results.

Title, Authors, & Time

Design

Main Result

The Meaning of Leprosy and Everyday

Experiences: An Exploration In

Cirebon, Indonesia. (Peters et al., 2013)

Qualitative

Giving Meaning to Leprosy, etiologi, seeking

care: Perspective on Diagnosis and Treatment,

Understanding Healing and Cure, Impact of

living with cure

An Exploration of Health, Family, and

economic Experience of Leprosy

Patient, Iran. (Abedi, Javadi, & Naji,

2013)

Qualitative

physic, heatlh, family and Economic.

Dealing with Stigma: Experiences of

Persons Affected by Disabilities and

Leprosy. (Lusli et al., 2015)

Qualitative

Stigma, impact on emotions, impact on thoughts,

impact on Behaviour, and impact on Relationship

Life Experience of Korean Patients

with Hansen’s Disease in Sorok Island

Hospital. (Yang, 2014)

Qualitative

Bad disease approaching as fate, family breakup

and far from the village, new life in Sorok Island

Hospital, treatment of Hansen’s Disease and

disability, life in the disease community, comfort

and hope

The Lived Experience of Patients with

Leprosy at Kaganda Hospital, Uganda.

(Raphael et al., 2017)

Qualitative

Living with physical disability, living with social

dilemmas, living with economic hardships,

relative social acceptance, and living in harmony

with self and God

Stigma in Leprosy: A Qualitative Study

of Leprosy Affected Patients At Green

Pastures Hospital, Western Region of

Nepal. (Adhikari, 2013)

Mixed Method:

Quantiative

&Qualitative

Concleanment and disclosure

Self stee, shame, and from others

Perceptions of the diease effects

Marriage and leprosy

Experience with leprosy

The Way Women Experience

Disabilities and Especially Disability

Related to Leprosy in Rural Areas in

South Sulawesi, Indonesia. (Schuller et

al., 2010)

Mixed Method:

quantitative &

qualitative

work

Social Activity

Acceptance in community

Self stigma

The Experiences of People affected by

Leprosy Who Participated in Self-Care

Groups in The Community: A

Qualitative Study in Indonesia.

(Susanto, Dewi, & Rahmawati, 2017)

Qualitative

Self-perceived condition

Adherence to treatment

Ability to do self-care

The kind of help and services received

Acceptance and support for leprosy patients

Stigmatisation and Discrimination:

Experiences of People Affected by

Qualitative

Link between Lack of Knowledge/Myths about

Leprosy and Stigma

Access to Health Services

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Leprosy in Southern Ghana. (Dako-

Gyeke, Asampong, & Oduro, 2017)

Access to Employment

Contentment with the Leprosarium

A Temporal and Sociocultural

Exploration of the Stigma Experiences

of Leprosy Patients in Brazil. (Sillo et

al., 2016)

Qualitative

stigma

changing attitude towards and leprosy

discrimination by the goverment

discrimination by the family member

discrimination by the work place

complication of leprosy

Impact Of Socio-Economic

Rehabilitation On Leprosy Stigma In

Northern Nigeria: Findings Of A

Retrospective Study (Ebenso et al.,

2007)

Qualitative

Retrospective

Stigma: knowledge, beliefs and attitudes.

Overall changes in participants’ lives following

their experience of SER.

Impact of SER on participation in life situations.

Changing community attitude toward SER

participants.

Suggestions for improving SER service delivery

The Impact on Leprosy on Martial

Relationships and Sexual Health

Among Married Women in Eastern

Nepal. (Van’T Noordende, T., Van

Brakel, Banstola, & Dhakal, 2016)

Mixed Methods

Additional Information Concerning Leprosy-

Affected Women

Results Regarding Marriage, Sexual

Relationships, and Sex Education Applicable to

All Women

Factors Affecting the Marital Relationship of

Women

Factors Affecting the Sexual Relationship of

Married Women in Nepal

Exploring the Challenges of Rural

People affected by Leprosy to

Reintegrate within Their Community of

Origin and Their Coping Mechanisms:

A Study in ALERT Center, Addis

Ababa. (Yirga, 2016)

Qualitative

biological challenge

psychological challenge

social challenge

economic challenge

The coping mechanisms

The Health Seeking Behavior of

Leprosy Patients (Singh, Sinha,

Banerjee, & Jaswal, 2013)

Qualitative:an

explanatory

model

Perseption

treatment

The Lived Experiences of Women

Living in a Leprosy Colony in

Hyderabad, India: A Phenomenological

Study. (Charles-Damte, 2016)

Qualitative

Who i am, relationship, leprosy, social issue, life

in the colony

Table 5: Synthesised findings.

Title,

Authors,

& Time

About

Lepros

Physic

Experienc

Health

Experienc

Psycholog

Experienc

Stigma

Experienc

Social

Experienc

Economic

Experienc

Activity

Experienc

Peters et

al., 2013

√

Abedi,

2013

√

Lusli et

al., 2015

√

Yang,

2014

√

Raphael

et al.,

2017

Uganda

√

Adhikari,

2013

√

The Live Experience of People with Leprosy

169

Schuller

et al.,

2010

√

Susanto

et al,

2017

√

Dako-

Gyeke et

al., 2017

√

Sillo et

al., 2016

√

Ebenso et

al., 2007

√

Van’T

Noordend

e et al.,

2016

√

Yirga,

2016

√

Singh et

al, 2013

√

Charles-

Damte,

2016

√

4 DISCUSSION

This systematic review study shows the life

experiences of people living with leprosy living their

daily lives. All based on study and research included

in the review. This study is needed to improve the

quality of services offered by health professionals.

Critical appraisal applied to the study highlights the

limitations of existing literature methodologies,

particularly the lack of reference to theoretical

saturation and the lack of detail surrounding the

minor themes of each study. The present study

provides important clear data from the analysis and

confidence of the results obtained, especially in minor

themes (codes). The complexity of individual life

experiences with leprosy provides a different

perspective, requiring an approach through a more

thorough assessment not only in how to solve leprosy

from the point of view of treatment. It needs a more

thorough and deep assessment, then in understanding

needed a good understanding between health workers

with people with leprosy so that not only physical but

also able to answer other problems. The synthesis of

evidence can identify all the objectives of the review

identifying the importance of individual

understanding of leprosy, what happens from the

physical aspect, the fulfilment of the health, the

psychological dynamics experienced, the stigma

dynamics that occur, the relationships and social

roles, economic demands, and daily activities that is

lived.(Ebenso et al., 2007; Schuller et al., 2010;

Peters et al., 2013; Singh et al., 2013; Charles-Damte,

2016; Van’T Noordende et al., 2016; Susanto, et al,

2017).

4.1 Implication for Practice

Reviews conducted to focus on understanding and

experience from the aspect side of the life experience

of individuals with leprosy. The existing study makes

it clear that in the lives of people with leprosy from

the above results from understanding to other aspects.

Understanding leprosy-related individuals should be

more emphasized as to whether leprosy is actually,

what constraints arise, major problems that often

occur, the process of treatment, drug side effects,

disability, self-view and society, difficulty in the

move and also touch on the economic aspect

(Charles-Damte, 2016; Lusli et al., 2015; Peters et al.,

2013). It is important for health workers to be able to

conduct early assessments on things outside the

objective point of view. For example by assessing the

emotional, psychosocial status, etc. So that the

provision of individual services with leprosy can be

accommodated well and not generalize and do not

forget to provide the correct understanding and

justification of the wrong perception when finding

individuals with leprosy thoughts that are not

appropriate

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4.2 Strengths and Limitations

It should be acknowledged that in conducting a

general literature review there is no scope for in-depth

analysis of the data collected so consideration is

necessary on a number of limitations when

synthesizing the studies found. First, all studies are

meta-aggregated, often found differences in

interpreting experience and interpretation of study

results. This can happen at any time during a

synthesis of qualitative data on aggregate from

various sources (Sandelowski, Barroso and Voils,

2007). minimizing potential errors, the guidelines

used in this study using the systematic review

methodology of The Joanna Briggs Institute in 2014

include screening on multiple data extraction quotes

and reporting findings that are considered to be non-

credible. The research team also has expertise in

reviewing the life experiences of leprosy patients, the

individual life dynamics with leprosy, and qualitative

methodologies. Secondly, it is possible that our

search strategy failed to identify all related literature

because we chose to make a narrow search including

keywords that are explicitly relevant to the topic.

Third, Analysis is focused on a particular concept and

has a certain theoretical orientation. Consequently,

some of the uniqueness of the article is missed in the

analysis. Further consideration of political and

environmental factors is limited to recent data.

5 CONCLUSIONS

This systematic review of various qualitative studies

from various countries that provide a collection from

an informed perspective on the life experiences of

individuals with leprosy in living their daily lives

during leprosy. Individual life experiences with

leprosy provide information that is so diverse and has

some similarities around the world. Individuals with

leprosy are faced with various problems arising from

leprosy both in the community and in the hospital.

Diverse experiences of forming individuals with

leprosy have diverse perspectives and attitudes in

placing themselves in the environment. The

uniqueness of each individual with leprosy imaged

that every human being has different uniqueness and

problem. This review extends and deepens our

understanding of individual experiences with leprosy

thus providing implications for field practice in

dealing with individuals with leprosy in different

ways. The current results provide a clear illustration

of the current knowledge base and identify where

some of the elements of understanding are well

supported by the literature and elsewhere. This

information may be useful to guide further research.

It is important that clinicians consider the

interventions to be given, use them to support and

improve patient-focused care and improve the well-

being of patients with leprosy.

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