Knowledge, Attitude and Practices of caregivers for patients with leprosy

Introduction

Leprosy is a chronic infectious disease that is associated with serious morbidity and is a disease of public health concern because of the case load and the social stigma attached to the disease (Poudel et al, 2019). The advance in multidrug therapy in the past 50 years has prompted a drastic decrease in the prevalence of leprosy (Leturiondo et al, 2019). However, 105 endemic countries, specifically located in Southeast Asia, in the Americas, Africa, Eastern Pacific and Western Mediterranean, still concentrate a large number of cases. There were over 210,000 new patients diagnosed in the world each year, leprosy is still a public health problem in many low and middle-income countries(WHO., 2017).

Late detection of leprosy is related to misdiagnosis, inadequate or incorrect knowledge about the disease as well as negative beliefs and attitude about leprosy among persons affected and their families. Several studies attributed delayed diagnosis of leprosy to the use of traditional medicine and/or low awareness of modern treatment, ignorance of leprosy, unavailability of services, and stigma associated with the disease (Singh et al., 2019).

Lives of people affected by leprosy have caregivers who take on different roles in the daily upkeep of the latter. These caregivers are among those who come into close contact with people affected by leprosy and also interact freely with the general public. Per their caregiving role, they observe at firsthand stigmatizing and discriminatory tendencies that are exhibited by the public towards persons who have been cured of leprosy (Asampong et al., 2018).

Stigmatized disease conditions as leprosy, courtesy or affiliate stigma is experienced by their family members, occurs when a person experiences stigma because of his/her close association with another person with a stigmatizing feature and they are both devalued, while individuals themselves do not have the mark, they are stigmatized because they live with, work with or have close social relations with individuals or groups that are labelled (Dako-Gyeke M., 2018). Family support is very much needed by leprosy patients, because support from the family can improve the quality of humanity, stability of personality, behavior, and ability to relate very well, the lack of family support results in patients withdrawing so that patients do not seek treatment and take good care of themselves (Santoso et al., 2019).

Community health nurse and all other members of the health team have important roles in the creation of knowledge about many things related to leprosy such as the prevention of disabilities, health promotion, diagnostic research, treatment, monitoring through instruments, self-care and family guidance, and epidemiological vigilance and control, all of which aim at offering an integral care to the patients (Lima et al., 2018).

Significance of the study

 Elimination of leprosy as public health problem (defined as a registered prevalence of less than 1 case per 10. 000 population). However, pockets of endemicity have continued in many countries. There were 208,619 new leprosy cases registered globally each year, according to official figures from 159 countries from the six WHO Regions. It is a harsh reality that nine out of every 100 new cases diagnosed today are children. Egypt is one of the global list of twenty two high-burden countries for leprosy which accounted for 96% of new cases (WHO, 2019).

Although Egypt has achieved the WHO goal of leprosy elimination since 1994, there are still certain foci with a prevalence rate of more than one case per 10,000 of the population. Almost 60% of new cases detected each year in Egypt originate from only six governorates, mainly located in the south of the country. The WHO country office Egypt, in collaboration with the Ministry of Health and Population’s leprosy control programme, announced that the highest prevalence rates of leprosy are in Upper Egypt (WHO, Regional Office for the Eastern Mediterranean (EMRO), 2018).

The most recent report was submitted to WHO from Egypt on the registered prevalence of leprosy there were 721 registered prevalent cases each year of whom many cases with severe disabilities, and approximately 6% of new cases reported annually are children under 15 years of age (WHO, 2019). Early detection is necessary to reduce the physical and social consequences of the disease as the complications of leprosy depend on how timely in the disease process leprosy is diagnosed and treated (Van ‘t Noordende et al., 2019).

Aim of the study

This study therefore aimed to assess knowledge, attitude and practices of caregivers for patients with leprosy.

Research questions

1. What is the level of family caregivers' knowledge regarding leprosy?
2. What is the level of family caregivers’ attitude towards patients with leprosy?
3. What is the level of family caregivers’ practices for patients with leprosy?
4. Is there a relation between the caregivers' sociodemographic and their level of knowledge, attitude and practices? 

Methodology

Study design:

 A descriptive cross-sectional study was used to achieve the aim of the present study and answer the research questions.

Setting:

This study was conducted at Western Dermatology and leprosy clinic, the only Leprosy clinic in Minia City, Egypt. It provides a wide range of health care services for urban and rural populations from near and far districts in Minia Governorate.

Study population and sampling technique:

Purposive sampling technique was used. Theparticipants were family caregivers of leprosy patients attending Western Dermatology and leprosy clinic with their care recipients. All participants who visited the clinic during the study period from February to August 2020 were recruited on the basis of the following criteria:

Inclusion Criteria:

• Family caregiver aged 18 years or more.
• Caregivers of people affected by leprosy who were undergoing treatment for leprosy reactions, ulcers, disability-rehabilitation.
• Primary caregivers; as persons who adopting functions of care and supervision in basic and/or instrumental daily activities of the affected person.
• Giving care to patient for at least 6 months.

Exclusion Criteria:

• Those who were paid in return for caregiving service; were excluded from this study.
• Finally, a total of 165 caregivers of registered leprosy patients who were eligible for the study were included. 

Data collection tool:

A structured interview questionnaire was conducted. It was designed in the light of parameters assessed in similar studies (Seshadri et al, 2014; Stephen et al, 2014; Peters et al, 2014; Adhikari et al, 2014; Tesema and Beriso, 2015; Schutten, 2018; Zewdu et al, 2018), however it was modified to suit the situation in Egypt. The questionnaire was divided into four sections covering the following topics:

I- Socio-demographic data:

Personal characteristics and socio-demographic of the family caregiver, the nature of the relationship with the patient and the duration of caregiving/year.

II- The Knowledge about Leprosy:

Knowledge was assessed via thirteen questions that covered the following items:  synonyms of leprosy disease, causes, early signs & symptoms, mode of transmission, Contagiousness, prevention, treatment (duration of treatment, curability of disease, the way to treat) signs and symptoms of leprosy reaction and Preventive treatment for household contacts.

The questions addressed the respondent's knowledge about leprosy, which is sometimes intertwined with certain beliefs. This revealed misconceptions or misunderstandings and gaps in knowledge that were present so the whole questions were open-end questions. (Several answers were possible, so we listed it and did not give suggestions on answers; just ticked the answers given by the interviewee spontaneously) to facilitate data collection.

Each question was rated zero for wrong answer and one point1 for right answer. The knowledge score was calculated by summing the scores for all questions thus the overall score ranged from (0-13). the level of knowledge for each participant was classified as good (> 70% = ≥ 9 points), fair (30%–70%= 4-8 points) and poor (< 30%= < 4 points) (Van‘t Noordende et al., 2019).

III- Attitude towards patients with Leprosy:

Perceived attitude towards persons affected by leprosy was assessed via fourteen statements with three-points Likert scale. Scores for negative attitude statements ranged from two (for agree) to zero (for disagree). The opposite of this scoring system was used for positive attitude statements. The total score was calculated by summing the scores for all statements thus the overall score ranged from (0-28). Levels of attitude were then classified as negative attitude (> 70% = > 19 points), neutral (30%–70%= 9-19 points) and positive attitude (< 30%= < 9 points).

III. Practices of family caregivers for patients with leprosy:

Practices of caregivers were assessed via sixteen questions; supporting patient during treatment, doing periodic examination 2-items and participating in patient daily care 14-item). Possible responses to each question were measured by a three-point Likert scale ‘never’ (zero point), ‘occasionally’ (one point) and ‘always’ (two points). The total score was then calculated by summation of the responses to all the 16 questions and ranged from 0 to 32. The participants were classified into three categories according to their total score: as good (> 70% = ≥ 23 points), fair (30%–70%= 10-22 points) and poor (< 30%= ≤ 9 points).

Content Validity and reliability:

The content validity for the questionnaire was assessed based on expert review. Based on experts` comments and recommendations; modifications had been made such as rephrasing of some sentences rearrangements of some sentences and adding few questions. Cronbach’s alpha coefficient was used to assess the internal consistency of the questionnaire and alpha coefficient was 84%. 

Pilot Study:

The questionnaire was pre-tested by seventeen (17) family caregivers before the actual work began in order to test the clarity of the tool and to estimate the time required to fill the sheets. Modifications were done in the study tools based on the pilot study; this sample was excluded from the total study sample.

Study procedure:

• Permission to conduct the study was obtained from the Dean of Faculty of Nursing at Minia University. An official permission was granted from the director of Western Dermatology and leprosy hospital.
• The study duration lasted for 6 months; the study started the beginning of the beginning of February 2020 till August 2020
• A structured interview was conducted in a separated room in the clinic: The researcher met participants and they were interviewed at times that were convenient for them during waiting time for their patients to finish examination, making ulcer care or wound care and dressing, physiotherapy and taking medication from pharmacy.
• The tools were filled by the researcher by asking the Family caregivers of patients with leprosy about items of the tools after explaining the nature and purpose of the study to them and rights to withdraw at any time.

Ethical consideration:

The study protocol was approved by the Ethical Committee of Faculty of Nursing, Minia University. Informed oral consent was obtained from all participants of the study after explaining the nature and benefits of the study. Confidentiality and anonymity of the participants were strictly maintained through a code number on the questionnaire.

Statistical Analysis:

All analyses were done using SPSS, version 22. Quantitative data were presented by mean, standard deviation while qualitative data were presented by frequency distribution. Student t-test and ANOVA test were used to compare means. Pearson correlation was used to determine the association between two quantitative variables. Graphical presentation of the data was done using Microsoft Excel 2017.The probability of less than 0.05 was used as a cut off point for all significant tests and all statistical tests were 2 tailed.

Results:

Table 1: Distribution of the family caregivers according to sociodemographic data

The characteristics of the participants were shown in Table 1. More than half of the caregivers were females (58.5%), married (78.2%), and illiterates (63.6%). The mean age of caregivers was 38.2±12.5 years and only 4.3% of them had a job with fixed salary. About one-third of the participants consist of daughter/son and partners of the patient, 36.4% and 30.3%, respectively. The duration of caregiving ranged from 6 months to 35 years with a mean of 8.3 ± 7.4 years. About 69% of the caregivers had monthly income less than 1000 Egyptian pounds. and 46.1% had other members of the family suffering from the same disease.

Table 2: Distribution of the studied family caregivers Knowledge regarding leprosy

Unfortunately, the majority of caregivers (84.8%) had poor level of knowledge about leprosy. Nobody (0%) answered correctly on questions about causes of leprosy, duration of isolation period, symptoms of leprosy reaction or presence of prophylactic treatment for household contacts.  Few proportions of participants gave the correct answers as regard first signs and symptoms (10.9%), contagiousness during and/or after treatment (2.4%), mode of transmission (4.3%), prevention of disabilities (12.1%). About one-quarter (26.1%) knew that leprosy is a curable disease. The overall knowledge score was 2.43±1.11 out of the total score of 13 (Table 2).

Table (3): Distribution of the studied family caregiver attitude towards patients with leprosy

In (Table 3): Regarding the attitude of family caregivers towards leprosy, 77% of the respondents have negative attitude towards leprosy patients. The analysis revealed that 78.2% and 84.2% of the participants agreed that the leprosy patient and his family respectively had the right to conceal the condition and thought their neighborhoods and relatives treating them with caution. More than three-quarters of participants stated that those around them avoid direct contact with a leprosy patient, treat them with caution and refuse to visit the house due to the presence of a leprosy patient, 78.8%, 78.2% and 76.4%, respectively. The majority (92.7%) of caregivers agreed that they had psychological, health, social and economic problems in the family because of an infected person, 81.8% felt ashamed or embarrassed as having a person with leprosy in the family and 84.2% stated that society viewed leprosy patient as inferior (feeling fear or disgust). Furthermore, 80.6% of our participants thought that leprosy possibly could be a problem in the marriage of a relative for a person with leprosy and 79.4% agreed that getting leprosy cause family problems for a married person. The overall Attitude score was 21.07±5.07out of the total score of 28.

Table (4): Distribution of the studied family caregivers’ practices for patients with leprosy

As shown in table (4), level of practices among caregivers was poor by 78.9% of participants. particles such as wound care, trimming of the wound edge, inspection of the patient's hands and feet, ensuring that the patient wear protective cloths, examine and clean the patient's eyes and help the patient to undertake physiotherapy were never done by more than 90% of participants. The overall practice score was 8.39±2.31out of the total score of 32.

Table (5): Relation between knowledge, attitude and practice and socio-demographic data of family caregivers

Table (5) showed that except for the education level, no statistically significant relation between family caregivers’ sociodemographic characteristics and their level of knowledge or attitude about leprosy. Educated participants had higher mean knowledge score (2.58±1.35) and lower negative attitude level (20.09±6.01) than non-educated (2.35±0.98), and (21.24±5.13), respectively. However marital status and duration of caregiving were statistically significant factors related to the level of practice. Married caregivers and those who caring for patients more than 20 years had higher practice scores.