Patients ’ and families ’ experiences in Lung Tuberculosis treatment in Kebumen District , Central Java Province : A phenomenology study of ‘ Drop Out ’ and ‘ Uninterrupted ’ groups

Background: Tuberculosis (TB) is still a worldwide health problem based on the impact of the disease, difficulties in the eradication and drop out tendency in treatment. One of the problems of TB in Indonesia is the high incidence of drop out treatment. Discontinuation of treatment leads to treatment failure, a source of transmission and drug resistance. Objectives: This study aimed to examine the process of meaning-making for the patients and their families’ as well as their PMO (Pengawas Minum Obat) / DOT-TB (Direct Obverser Treatment of Patients with Positive Pulmonary Tuberculosis) experience in pulmonary tuberculosis treatment of ‘Uninterrupted’ and ‘Drop Out’ groups. Methodology: A qualitative phenomenological approach was used with a purposive sampling strategy to select the participants. The data were collected by a psychologist with an in-depth interview with 7 patients and their families who continued the treatment until fully recovered (‘Uninterrupted’) and 7 patients and their families who dropped out the TB treatment (‘Drop out’) with the total subjects are 28 people. The location of research was in the Kebumen District which includes a Puskesmas (Community Health Center), Hospital and UP3 (Pulmonary Disease Treatment Unit). The Colaizzi method was used to analyze the data. Results: Patients’ and their family’s knowledge about TB of both groups were insufficient. However, the ‘Uninterrupted’ group were found to be self-motivated and received all possible psychological, and physical supports from their family while encouraging treatment adherence as factors that support the sustainability of pulmonary TB treatment. Whereas, these factors were not found in the ‘Drop out’ group. Conclusions: Self-motivation and family support / PMO for pulmonary TB patients is the key to the sustainability of pulmonary tuberculosis treatment until fully recovered. Education and counseling for pulmonary TB patients and their families / PMOs are absolutely necessary in Indonesia.


BACKGROUND
Tuberculosis (TB) remains one of the world's major health problems although control efforts with the Directly Observed Treatment Short-Course (DOTS) strategy have been applied in many countries since 1995 1 .TB is not only a world problem but also a problem at regional, national and local levels.By 2014 there are approximately 9.6 million new TB composed of 5.4 men, 3.2 million women and 1 million are children.Approximately 1.5 million TB deaths have occurred consisting of 1.1 million TB with HIV (-) and 0.4 million TB with HIV (+).The TB deaths include 890,000 men; 480,000 women and 140,000 children 1 .In 2014 in Southeast Asia and Western Pacific Region there are 58% of the world's 9.6 million TB cases.Indonesia is the second largest country in the discovery of new cases of pulmonary TB.The sequence is India (23%), Indonesia (10%) and China (10%) 1 .In 2013 the prevalence of Indonesia's population diagnosed with pulmonary TB by health personnel is 0.4%, not much different from 2004 2 .Provincial TB prevalence data from Central Java in 2012 amounted to 106.42 per 100,000 population 3 .Based on Kebumen District Public Health Office data in 2014 there were 1553 TB patients 4 .TB treatment takes a long time and can cause boredom in patients.Non-compliance in treatment will lead to drop out.The inability of the patient to complete the self-administered regimen leads to treatment failure, the possibility of disease relapse, drug resistance and continuous transmission of infection 5 .
Based on the data from Kebumen District Health Office from 2012-2014, showed that the value of "dropping out treatment" for pulmonary TB treatment was 13.81% in 2012, 12.59% in 2013, and 9.17% in 2014.Based on these data, there is a slight downward trend 4 .Based on data from the Central Java Provincial Health Office in 2014 "drop out of treatment" was 6.2% while the National data for 2014 showed the number was 5.4% 3 .
The research question is: "How is the experience of patients and families / PMO in the treatment of pulmonary TB, in 'Uninterrupted' and the 'Drop out' groups?"The purpose of this study was to examine the process of meaning making of the TB patient and their family's experience in the drop out and uninterrupted treatment of pulmonary tuberculosis.
The benefits of research are 1) as sources of information that form the basis for policy making in order to improve public health, especially pulmonary tuberculosis prevention in accordance with the needs of pulmonary tuberculosis patients; 2) also as input for the development of pulmonary tuberculosis epidemiology and comparison with previous research so that it can enrich the patient and family knowledge / PMO in the both groups; 3) as basis for health workers who treat TB patients directly in order to understand the physical, psychological, social and financial problems of pulmonary TB patients; 4) provide a foundation for the development of research on drop out phenomenon for the treatment of pulmonary TB and 5) the results of research can be used as a reference frame for further research and provide preliminary information for future research development.

RESEARCH METHODS
This type of research was qualitative with a phenomenological approach.The research was conducted at the health facility in Kebumen Regency.The research area consisted of Community Health Center, Hospital and Lung Disease Treatment Unit (UP3).Participants in this study were patients and their families of 'Drop out' and 'Uninterrupted' treatment of pulmonary tuberculosis in Kebumen District in 2015.The family is a family member / PMO of the patients who are participants.Participants were 28 people, consisting of 7 'Drop out' patients of TB treatment, 7 families of 'Drop out' patients of TB treatment, 7 'Uninterrupted' patients of TB treatment and 7 families of 'Uninterrupted' patients of TB treatment.Sampling technique used purposive sampling.The purposive sampling strategy commonly used in phenomenological research applies specific sampling criteria.
Inclusion criteria for TB patients were: a. Pulmonary TB patients b.Aged over 15 years old c.Patients in the treatment of pulmonary tuberculosis who "continued treatment until healed" and "dropped out of treatment" in Kebumen District in 2015 d.Patients were able to recount their experiences in treating pulmonary tuberculosis that "continued treatment until healed" and "dropped out of treatment" e. Patients and their families / PMO willing to be participants proved by signing informed consent.
Family inclusion criteria for pulmonary TB patients were: a. Families of patients in the treatment of pulmonary tuberculosis who "continued treatment until healed" and "dropped out of treatment" in Kebumen District in 2015 b.Family members involved with patients in the treatment process / PMO c.The patient's family was able to recount their experiences in treating Pulmonary TB patients who either "continue treatment until healed" or "drop out of treatment" d.The patient's family / PMO willing to be participants proved by signing informed consent.
The research instrument used was in-depth interviews with guidelines.Participants were divided into groups for the in-depth interview which lasted approximately 1 hour and were recorded using a camcorder.Data collection was done by the researchers and assisted by 1 psychologist who had previously been explained the research purpose.Data analysis used the Colaizzi Method.The transcript results were read and analyzed by 4 coders, found that the following keywords were grouped into categories and then grouped into themes and subthemes.For the validity of the research, triangulation process was applied, i.e. triangulation of data sources and resources between patient and patient's family.

RESULTS
The relationship status between patient and family / PMO in the 'Drop out' group is husband and wife (4 people); sister (2 people); and mother-child (1 person), while for the 'Uninterrupted' group is husband and wife (6 people) and sister (1 person).The age range between patient and family / PMO in the 'Drop out' group is siblings (2 years), husband and wife (1,2,5 and 12 years), mother-child (12 years), while for the 'Uninterrupted' group is husband and wife (0,2,3,5,7 and 12 years) and mother-child (26 years).
Both patients and their families who were in the 'Drop out' and 'Uninterrupted' groups had a lack of knowledge about TB disease, and had various social and economic problems.The 'Drop-out' patients had a high risk of disobeying the treatment and the family did not support the compliance of pulmonary tuberculosis treatment but the 'Uninterrupted' patients and families had several success factors: motivation, coping of patients and their families who succeeded in solving problems, good health care and family support so that patients can complete the treatment.swallowing of medicines 8 .To overcome this problem, health workers ask patients to appoint their families who will become PMOs.3. Lack of family support.
Emotional relationship between family members is very important for family well-being.Families with good emotional ties will be able to deal with challenges and stress well 9 .To overcome this, health worker should adjust family centered care.4. Incorrect patient's perception of superiors.
Patients were afraid of being blamed by their superiors if they did not work due to pulmonary TB treatment.Individuals included in social support are spouses (husband or wife), parents, children, relatives, friends, health teams, superiors, and counselors 10 .To overcome this, health workers conduct routine counseling to pulmonary TB patients.5. Coping with patients who are not successful in overcoming the problems.Various problems are encountered by patients who dropped out of treatment.Problem-solving can be done by both the patient and family.The effort made is simply called 'coping'.Coping is a common tendency that individuals use to handle stressful events in various ways 11 .
For patients who dropped out of treatment, the coping did not succeed in solving the problems.Sometimes, coping for patients in overcoming the side effects of medicines is with alternative medicine.Confrontative coping means the attempt to change the situation that is considered a source of pressure by doing things that are contrary to the rules that apply even though there is sometimes a considerable risk 12 .
The coping with psychological problems often involves 'a feeling of despair' that causes treatment interruption or drop out.Behavioral disengagement means the individual reduces effort in the face of stressful situations that can even result in surrender or doing nothing about the source of stress 11 .
The coping with the response of health workers sometimes involves feelings of shame and fear with the result that it causes patients to switch to other health facilities.
The coping with distance problems often involves this frustration.The coping on the cost issue includes how the patient feels they are an inconvenience or burden to their

DISCUSSION
Both patients and their families who were 'Drop out' and 'Uninterrupted' have less knowledge about Tuberculosis.Knowledge is a very important domain for the formation of one's actions.The knowledge covered in the cognitive domain includes 6 levels: knowing, understanding, application, analysis, synthesis, and evaluation.The participants were only up to the stage 'knowing' and 'understanding' but have not used the knowledge in real conditions 6 .To overcome this problem, health workers provide an explanation about pulmonary TB disease at the beginning of treatment and during treatment.
Patients and families / PMO in both group, 'Drop out' and 'Uninterrupted', have experienced various problems.The problems such as family problems, problems with comorbidities, medicine problems, financial problems, psychological problems, health care problems, problems relating to health workers, problems related to personality.Medicine problems are always present in each group.
The number of problems in the patient and family group / PMO in the 'Drop out' group were more than the patient and family / PMO group in the 'Uninterrupted' group.To overcome this, a health worker can identify the problems of pulmonary TB patients before taking treatment and during treatment.Patients in the treatment of pulmonary tuberculosis who are 'Drop out' have factors that do not support the sustainability of pulmonary TB treatment, as follows: 1. Incorrect perceptions of TB recovery.Participants had a perception of healing that was 'feeling good', weight gain or normal weight, and already feel healthy.Symptoms of TB can disappear within two to four weeks after taking the drugs.This incident often causes patients to stop taking medication, because reduced complaints of illness are often considered by patients as a sign of healing.Pulmonary TB medicines provide a clinical cure faster than the complete bacteriological cure 7 .To overcome this, a health worker should provide a routine explanation in pulmonary TB patients about signs of recovery of pulmonary TB. 2. There is no supervisor for patient's medication from the family.
The level of observance of taking TB medicines by empowering family members is better than without the use of family members in supervising the actual family.Sometimes, the coping with comorbid problems is to seek a general practitioner and stop treatment from the Regional General Hospital.The coping with the problem of health services that are less than optimal, such as long queues, often involves moving to a specialist.There are two factors that influence the individual in carrying out coping strategies namely internal factors and external factors.Internal factors are factors derived from the individual: characteristics of personality traits and coping methods used.External factors are factors that come from outside the individual: time, money, education, quality of life, family and social support and the absence of other stressors 11 .
The health workers who perform a person-centered approach, provide more personalized care to address the various problems and challenges and possess an ability to work together to face the problems challenging the patients.The health workers also can more effectively consult with patients and their families so that a closer relationship can develop between the healthcare provider and the patients 13 .
In the 'Drop out' group of patients' families / PMOs, there are some risks and challenges of the family that does not support TB treatment, as follows: 1. Incorrect family perception of TB recovery.
If the patient is able to work, have the active spirit and look healthy (doing his own daily activities) then he/she is said to be healed.This can result in lower family support given, thus impacting family members to stop the treatment.If the family reminders about the importance of continuing treatment regularly for the sick family are not given, then there can be treatment failure for patients with chronic diseases that require long treatment 14 .2. Family coping that did not solve the problem.
The coping to solve family problems sometimes involves letting patients take care of themselves.For example, in coping to overcome the wife's problem, the husband may assume that his wife is independent.The coping for health care issues can involve 'shame'.The coping for cost problem is done out of 'desperation'.Ultimately, the coping for drug side effects and no changes after taking the drug is 'an alternative treatment'.
Health workers can use a family-centered care approach to better meet the problems experienced by patients.In this approach, the family has a level of closeness and involvement in health services as well as in making decisions related to patients and providing health services.Patients who maintain 'Uninterrupted' treatment have selfmotivation and factors that support medication adherence.The 'Uninterrupted' patient's family has factors that support treatment: family motivation, successful family coping in solving problems, and health workers support to families.
Self-motivation can come from family and self-factors.Self-generated motivation is shaped by personal beliefs and patterns of values adopted.Confidence is the foundation, where a core belief can give rise to multiple strengths for concrete action 15 .Two dimensions of the traditional Health Belief Model include vulnerability and severity which can be interpreted as a fear of the disease.Fear is a powerful motivational force 16 .Values are an assessment of what is desirable, appropriate and valuable and can influence the social behavior of the patient 17 .The values adopted support awareness of the benefits for healing, economic benefits, and benefits for prevention of transmission.
Patient factors that support medication adherence in 'Uninterrupted' group are: 1. Coping patient successful in overcoming challenges.The coping on the cost issue is to follow the national health coverage program (BPJS).One dimension of problem-focused coping is active coping.Active coping means that individuals use steps to try to eliminate stressors or improve the effects of stressors 11 .The coping of drug problems involves still undergoing treatment because of the desire to recover.Patients sometimes must be forced to take medication, and can try using a mashed banana or a food considered not a problem.Family belief system is the key to the importance of the family because the centrality of religion and culture is the main source of spirituality or transcendence 9 .A selfcontrolling and accepting responsibility applies coping skills which are oriented on emotion-focused coping 12 .2. Good health services.
The long distance from the health service causes irregularities of some patients to seek treatment.TB patients whose homes are far from health services are at risk of dropping out of medication, because they may take a long time to reach a healthcare facility and require substantial costs for transportation 18 .3. Family support.
Family support is given to the patient who undergoes TB treatment as expected by him/her.This can occur because of a good communication process between the patient and family.If a patient is not working, then the form of support provided may be the wife of the patient working to replace the patient's position.Family support is very supportive action of patient's treatment success by constantly reminding the patient to take medicine, giving a deep understanding to the patient and encouraging them to remain diligent in doing the treatment 19 .
Family factors of 'Uninterrupted' group that support adherence of pulmonary tuberculosis treatment are: 1. Family Motivation.Motivation is due in large part to the family (wife, husband, parents-in-laws, children, and relatives), values, and patients who have the spirit to recover and complete treatment.One aspect of family resilience (family's ability to survive) is the family belief system.The family belief system is the core of family function that includes values, attitudes, beliefs, and basic assumptions about health and healing 9 .2. Successful family coping in solving problems.
The common form of this coping is 'grinding the medicine' and 'supporting the patients' who are undergoing treatment at the time of taking the medicine.
Factors that influence coping strategies include age, education, socioeconomic status, social support, personality characteristics, and experience.Social support is obtained from people around patients such as parents, relatives, close friends and the community 20 .3. Support of health workers to families.
Support provided by health workers to the family in accordance with that required by the TB patient.TB patients who can no longer work then are often replaced in that support function.Family interests consist of family cohesion, family belief system, and communication.One of the components of communication is a collaborative problem solving that involves working together to identify challenges and solutions to solve family problems 9 .Suggestions 1.For patients who were dropping out of pulmonary TB treatment: Health check-ups at health facility, provide motivation to complete the treatment, and if experiencing problems it should be discussed with family and health care workers.2. For family of patients who were dropping out of pulmonary TB treatment: Support to patients who are in accordance with the needs and advice from health workers.If any problems occur during treatment it should be consulted with health workers.3. Suggestions for health workers: Apply patient and family-centered care approach, providing information about pulmonary TB disease for patients and their families, services without walls or separation and family empowerment, good evaluation to patients and their families with checklist, and health workers are more active in treatment process of pulmonary TB, especially in helping patients and their families in dealing with problems experienced.4. The Public Health Office can conduct training for health workers about patient and family-centered care and make policies regarding the regulation of the referral system between Hospital, UP3, and Community Health Center. 5.For researchers: To conduct research on training health workers associated with the success of carrying out their role in reducing pulmonary TB treatment drop out incidents and conducting in-depth interviews more than once if the data has not reached saturation and provide more time in discussing with the psychologists about the questions that will be asked.

CONCLUSIONS
Self-motivation and family support / PMO for pulmonary TB patients is the key to the sustainability of pulmonary tuberculosis treatment until fully recovered.Education and counseling for pulmonary TB patients and their families / PMOs are absolutely necessary in Indonesia.

Figure 1 .
Figure 1.Illustrations of patient and family in the 'Drop out' and 'Uninterrupted' treatment of pulmonary tuberculosis