INTRODUCTION

Substance dependence is a social problem worldwide. Today, there is no part of the world that is free from the curse of substance dependence.¹ Millions of substance addicts all over the world are leading miserable lives, between life and death.² India too caught in this vicious circle of substance dependence and members of substance dependence are increasing day by day.³

The burden of providing sustained care to these patients affects the well-being and general health of the care giver. The burden of caregivers may be associated with several factors of care giving situations, for example, the level of patient dependency, the number of care giving duties, the level of caregivers care –related knowledge and skill, the level of caregiver preparedness, and accessibility to resources.^4,10 A substance dependent person in the family affects almost all aspects of family life, e.g., interpersonal and social relationships, leisure time activities, and finances.^5,14 Substance dependence invariably increases conflicts, negatively affects family members, and burdens in the families.⁶ A study from India compared families of 30 subjects each with alcohol dependence, opioid dependence, and schizophrenia, and assessed the burden by the Family Burden Interview Schedule (FBIS). Moderately-severe objective, subjective, and different domain burden were reported for alcohol dependence, opioid dependence and schizophrenia groups¹. Another study from India used FBIS to assess burden in wives of men with opioid dependence syndrome. Severe burden was reported more often than moderate burden on both subjective and objective assessment². A study from Nepal assessed family burden in 30 subjects each with intravenous drug use and alcohol dependence; the overall burden was higher with the former, and compared to other family caregivers, the spouses were more tolerant and reported a lower perceived burden.⁷ The extent of drug addiction in Punjab is alarming. Department of Social Security Development of Women and Children suggested that as many as 67% of rural households in Punjab have at least one drug addict in the family. There is at least one death due to drug overdose each week in the region.^8,9 Thus the investigator decided to assess caregiver’s burden of care giving for clients with substance dependence.

MATERIAL AND METHODS:

The Phenomenological research study was carried out in the month of April 2015 till June 2015, to assess the burden among caregivers of client with substance dependence admitted in psychiatric unit of selected hospital. The data was collected from sample of 27 caregivers of clients with substance dependence admitted in psychiatric unit using purposive sampling technique. Eligibility criteria for inclusion included primary caregivers of the clients with substance dependence, caregivers who could speak and understand English, Hindi or Punjabi, and caregivers caring for clients with substance dependence for more than six months. Before the complete explanation of the procedure, researcher introduced herself and the need of interview to be conducted and explained about the purpose and nature of study. Interview procedure and process of audio taping the caregiver were assured for the confidentiality. Informed consent was taken from caregivers for conducting and audio-taping the interview. The caregivers who did not want to participate in the study were excluded from the study.

The tool used for the study was divided into two sections. First section included the socio-demographic profile consisting of items such as age, gender, relationship with the client, type of family, education, occupation and monthly income. Second section was semi-structured interview schedule with 14 open ended questions used to find out the burden on the caregivers of clients. Questions were formulated but the schedule was flexible. There was chance for expansion and adventuring into new areas. The questions asked were not necessarily the same nor of the same sequence. Some questions were formed from the answers evolved from the participants during the course of interview. Content validity of tool was determined by opinion from the experts in field of nursing. After establishing content validity of the instrument, it was translated to vernacular language. Permission to conduct study was taken from the concerned authority. The data collection was done by interview cum discussion method and subjects were given full freedom to speak out whatever they felt regarding the problems. As the interviews were audio taped with their consent, the researcher gave full concentration of the non-verbal clues of the clients and it was recorded. The audio-tape recordings were then transcribed into verbatim and analyzed. Data collection was done until no new information emerged. Data saturation was achieved through 27 interviews.

The current study used Denzin and Lincolns’(2005) model of trustworthiness^11,13,16. Transferability was ensured with the help of heterogeneous sample of the participants with various demographic characteristics. Credibility was strengthened by prolonged interaction with the family caregivers, and by discussing about the findings with expert nursing personnel (member-check). Confirmability was ensured using the memos to develop an audit trail of the research activities that were made through the research process. Dependability was enhanced through involving two co-researchers in analysis, who have more experiences in qualitative data analysis (peer-check).

The data was analyzed into two parts. In first section of tool, the data was analyzed by descriptive statistics. In the second part, the recorded interviews were transcribed into verbatim forms and were analyzed using thematic analysis. Investigator read and re- read participant’s descriptions, then extracted significant statements, formulated meaning for each significant statement, categorized formulated meanings into cluster of themes, and integrated findings to form meaningful and coherent pattern of themes. The analysis continued until all the thematic categories were saturated.

RESULTS:

The data gathered from first section of tool was analyzed by descriptive statistics to have frequency distribution of various subjects as per Socio-demographic variables (table 1)

Table 1: Frequency and percentage distribution of sample characteristics N=27

Characteristics	f	Percentage (%)
Age (in years)
^< 20	0	0
21-30	3	11.1
31-40	2	7.4
>40	22	81.5
Type of family
Joint	5	18.5
Nuclear	22	81.5
Residential area
Urban	15	55.6
Rural	12	44.4
Relationship with client
Parents	17	63
Sibling	3	11.2
Spouse	7	25.8
Any other	0	0
Education
Illiterate	3	11.2
Matric	9	33.3
Senior secondary	6	22.2
Graduate	9	33.3
Occupation
Service	9	33.3
Business	6	22.2
Agriculture	3	11.2
Any other	9	33.3
Monthly Income (in rupees)
<5000	3	11.2
5000-10,000	8	29.7
10,000-20,000	9	33.3
>20,000	7	25.8

The recorded interviews were transcribed into verbatim forms and were analyzed using thematic analysis. Based on the responses of caregiver, five themes were formulated i.e. Psychological Burden, Physical Burden, Social Isolation, Health Problems, and Financial Burden.

THEME 1:

Psychological Burden:

This was the major burden perceived by the caregivers. Caregivers of the client with drug dependence felt psychological burden which is one of the difficult burden to cope. Psychological Burden reduces the quality of life. The study reflects that caregivers of drug abuse client had blend of negative feelings as Sadness, anger, stress and guilt feeling.

Sub Themes:

1. Sadness:

It is an emotional pain associated with or characterized by feelings of loss, despair, helplessness, disappointment and sorrow. An individual experiencing sadness may become quiet or lethargic and withdraw themselves from others. Subject revealed feeling of sadness because of concern of decreased self care by the patient, worry of the happening and future, and due to unexpected happening in life. Few of the responses of the subjects expressing sadness are as follows:

“I keep on thinking that why this happened to me only. Sometimes I start weeping when I am alone because so much sorrow came to my life because of this incidence.”(Caregiver 5)

“When he (my son) used to be hungry then the soul of mother suffers. He refuse to eat, if drugs are not given to him. The meals if served before him used to be in the same condition even after a while.”(Caregiver 11)

“It often comes in my mind that what we were expecting and what happened. He (my son) had made everyone sad.” (Caregiver 23)

2. Anger:

Anger has lead to disruption of family relations in most of the subjects. Anger results due to unacceptable behavior of the drug addict clients which lead to increased intensity of emotional outbursts amongst the caregivers in the most of the caregivers. Some of the anger expressing statement by subjects is as follows:

“When my son rebukes me after drinking without any reason then I get so much angry and I wish he should not appear before me. (Caregiver 2)

“When my son comes after taking drugs, he quarrels with his mother and I get so much hyper that I thrash him.” (Caregiver 9)

“We feel very much angry at his deeds but we remain quite, in order to hide the stress from society.” (Caregiver 14)

3. Stress:

Subject expressed feeling of stress because of continuous threats of drug addict to commit suicide, and due to the helplessness about the future of the drug addict client. Stress as revealed by few subjects is as follows:

“His (my son’s) threats of committing suicide give us lots of worries.” (Caregiver 26)

“Seeing him (my son) in hospital make us worried about his health that he will be getting well or not.” (Caregiver 17)

“I feel very much worried about his (my sons) future, that what will happen with his future.” (Caregiver 22)

4. Guilt:

Guilt is experienced by the caregivers in a way that they feel themselves to be responsible for not paying proper attention to their clients earlier. Guilt as expressed by few subjects is as follows:

“We feel that there might be some deficiency among us and because of our mistakes our son become a drug addict.” (Caregiver 26)

“We never made our son to do any of the household work, which might be the reason of diversion of his attention towards these wrong deeds.” (Caregiver 5)

“I wish we should have paid attention towards him (my son) earlier, so that we could have stopped what is happening today.” (Caregiver 19)

THEME 2:

Physical Burden:

Physical burden was noticed as well as expressed by many subjects. Their important tasks in life were suffering because of being busy in clients care. As they had to take care of even minor things of drug addict, caregiver felt physically exhausted and stressed. Physical burden expressing statements by subjects are as ahead:

“He (My son) used to do all the works by himself but now due to drugs we have to take care of him. He comes late at night and then takes dinner late at night so we also have to be awakened.” (Caregiver 1)

“I take care for everything of him like eating, bathing etc. I am here for his care, and not able to have enough time to do other important tasks at home. I feel so exhausted as I have to keep check on his activities throughout the day.” (Caregiver 15)

“It seems as if we are rearing a child as we have to do everything for him (Our son) because he has no awareness of himself. Due to this there is a disturbance in our daily routine. Sometimes I feel so tired and want to get rid of all this, and wish him to behave in mature manner and take right steps.” (Caregiver 6)

THEME 3:

Social Isolation:

Most of the subjects have chosen social isolation as a tool to safeguard their reputation in society by avoiding interaction and outreach. Social isolation as revealed by few of the subjects is as follows:

“I feel like only a few people should turn up at my home and they should not be aware of my son’s addiction.” (Caregiver 18)

“I am always in worry that our neighbors should not come to know about the drug addict condition of my son .We earlier used to visit them after every 15 days but now because of this fear we visit them just once or twice in a year.” (Caregiver 1)

“When my husband shouts after drinking, I feel ashamed before the local people and I rarely go out.” (Caregiver 20)

“We hardly visit our relatives in order to save the future of our son. We pay much attention on him rather than going outside and try hide to hide his condition from the society.” (Caregiver 6)

THEME 4:

Health Problem:

Caregivers of the drug dependent clients had overwhelming stress leading to various psychological and physical health problems like hypertension, sleep disturbance, musculoskeletal disorders etc. Health problems as expressed by subjects are as follows:

“I can’t sleep at night and just keep on thinking about my son’s condition.” (Caregiver 9)

“My son’s admission in the hospital had made us to take care of him a lot. We have to feed him timely. It makes us restless. It has spoiled my sleeping cycle. The whole day is spent while worrying about his condition sometimes I even don’t like to eat anything.” (Caregiver 19)

“My heath is affected due to drug addiction of my son. I feel dead tired, feel chest pain and headache, and sometimes pain gets too much that I had to take medicine.” (Caregiver 2)

“Earlier I had cervical and back problems and now I am suffering from hypertension because of my son’s tension. Daily travelling in bus in order to visit him in hospital has aggravated my fatigue.” (Caregiver 3)

THEME 5:

Financial Burden:

For the treatment and care of the client, the caregivers need funds to avail resources which lead to financial crises to be managed. Caregivers also expressed feeling of shame while taking money from others and fulfill their financial needs. Financial burden as revealed by subjects is as follows:

“During his study period he used to ask much money from me .With time he started asking for more money from me, probably when he started taking drugs. Now his treatment gets much costlier. It is difficult for me to manage all these expenses as I am single earning person in the family.” (Caregiver 12)

“We have difficulty in managing household expenditures, but we are helpless as, we have to take care of treatment and hospital charges which are also very costly.” (Caregiver 16)

“His father is the only earning person we also have to look after for household expenditure, along with hospital expenditure, which is getting tough day by day.” His father feels so shame while asking for money from relatives for his treatment. Even now, relatives have started to refuse to debt money. (Caregiver 25)

“My son is unemployed and admitted in hospital. From where can we afford the treatment charges? He should also take responsibility of himself.” (Caregiver 4)

DISCUSSION:

Maximum 81.5% of the caregivers were of the age group of >40 years with mean age of 46.7 years and standard deviation of 12.53. Majority 81.5% subjects belonged to nuclear family, however only 18.5% belonged to joint family. Maximum 63% of the caregivers were parents of client admitted with substance dependent and least 11.2% were siblings of client. The caregivers revealed to have Psychological Burden, Physical Burden, Social Isolation, Health Problems and Financial Burden. Caregivers used variety of methods to divert their mind from the situation as watching TV, ventilation of feelings and taking spiritual help, which helps to divert mind and stay calm in stressful situation. As per similar study conducted by Surendra K Matto, Naresh Nebhinani et al.,¹¹ family burden was moderate or severe in 95-100% cases in all the groups and more for disruption of family routine, financial burden, disruption of family interactions and disruption of family leisure. Family burden was associated with low income and rural location. It was associated neither with age, education or duration of dependence of the patient, nor with family size, type of caregiver or caregiver’s education and occupation.

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Received on 31.12.2015 Modified on 21.02.2016

Int. J. Nur. Edu. and Research.2016; 4(2):169-173.

DOI: 10.5958/2454-2660.2016.00034.X