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A Qualitative Study to assess Perceived Burden among Caregivers of Client

with Substance Dependence

Article · January 2024

DOI: 10.5958/2454-2660.2016.00034.X

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 International Journal of Nursing Education and Research 4(2): April- June 2016

ISSN 2347-8640 (Print) www.anvpublication.org

2454-2660 (Online)

RESEARCH ARTICLE
A Qualitative Study to assess Perceived Burden among Caregivers of Client
with Substance Dependence
Mamta Choudhary
Assistant Professor, Department of Medical Surgical Nursing, Saraswati Professional and Higher Education,
College of Nursing, Gharuan, Mohali
*Corresponding Author Email: mamta24.c@gmail.com

ABSTRACT:
Background: Substance dependence is a social problem worldwide. Living with clients of substance
dependence is a difficult situation for the caregivers. The burden of providing sustained care to these patients
affects the well-being and general health of the care givers. This study explored the caregiver’s burden of care
giving for clients with substance dependence.
Objectives: To assess the perceived burden among caregivers of clients with substance dependence
Study Design: Phenomenological research design.
Materials and Methods: Seventeen family caregivers of the clients with substance dependence were recruited
using purposive sampling. Data were collected through face-to-face semi-structured interviews. Each interview
was transcribed verbatim and was thematically analyzed concurrently.
Results: Five major themes emerged from the analysis of the transcripts: Psychological Burden, Physical
Burden, Social Isolation, Health Problems, and Financial Burden. The study reflects that caregivers of drug
abuse client had blend of negative feelings as Sadness, anger, stress and guilt feeling. They experienced negative
physical and psychosocial consequences of full-time and highly extended care giving roles, such as
musculoskeletal disorders, sleep disturbance, a high level of anxiety, stress, and social isolation. Caregivers also
expressed financial constrains, and feeling of shame while taking credits from others to fulfill their financial
needs.

KEYWORDS: Caregiver burden, family caregiver, substance dependence.

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
Received on 31.12.2015 Modified on 21.02.2016
Accepted on 06.04.2016 © A&V Publication all right reserved
Int. J. Nur. Edu. and Research.2016; 4(2):169-173.
DOI: 10.5958/2454-2660.2016.00034.X
169
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
 International Journal of Nursing Education and Research 4(2): April- June 2016
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
170
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 trustworthiness11,13,16. 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)
 International Journal of Nursing Education and Research 4(2): April- June 2016

Table 1: Frequency and percentage distribution of sample of the subjects expressing sadness are as follows:
characteristics N=27
Characteristics f Percentage (%) “I keep on thinking that why this happened to me only.
Age (in years) Sometimes I start weeping when I am alone because so
<
20 0 0
21-30 3 11.1
much sorrow came to my life because of this
31-40 2 7.4 incidence.”(Caregiver 5)
>40 22 81.5
Type of family “When he (my son) used to be hungry then the soul of
Joint 5 18.5
Nuclear 22 81.5
mother suffers. He refuse to eat, if drugs are not given
Residential area to him. The meals if served before him used to be in the
Urban 15 55.6 same condition even after a while.”(Caregiver 11)
Rural 12 44.4
Relationship with client “It often comes in my mind that what we were
Parents 17 63
Sibling 3 11.2 expecting and what happened. He (my son) had made
Spouse 7 25.8 everyone sad.” (Caregiver 23)
Any other 0 0
Education 2. Anger:
Illiterate 3 11.2 Anger has lead to disruption of family relations in most
Matric 9 33.3 of the subjects. Anger results due to unacceptable
Senior secondary 6 22.2
Graduate 9 33.3 behavior of the drug addict clients which lead to
Occupation increased intensity of emotional outbursts amongst the
Service 9 33.3 caregivers in the most of the caregivers. Some of the
Business 6 22.2 anger expressing statement by subjects is as follows:
Agriculture 3 11.2
Any other 9 33.3 “When my son rebukes me after drinking without any
Monthly Income (in rupees) reason then I get so much angry and I wish he should
<5000 3 11.2 not appear before me. (Caregiver 2)
5000-10,000 8 29.7
10,000-20,000 9 33.3
>20,000 7 25.8 “When my son comes after taking drugs, he quarrels
with his mother and I get so much hyper that I thrash
The recorded interviews were transcribed into verbatim him.” (Caregiver 9)
forms and were analyzed using thematic analysis.
Based on the responses of caregiver, five themes were “We feel very much angry at his deeds but we remain
formulated i.e. Psychological Burden, Physical Burden, quite, in order to hide the stress from society.”
Social Isolation, Health Problems, and Financial (Caregiver 14)
Burden.
3. Stress:
THEME 1: Subject expressed feeling of stress because of
Psychological Burden: continuous threats of drug addict to commit suicide,
This was the major burden perceived by the caregivers. and due to the helplessness about the future of the drug
Caregivers of the client with drug dependence felt addict client. Stress as revealed by few subjects is as
psychological burden which is one of the difficult follows:
burden to cope. Psychological Burden reduces the “His (my son’s) threats of committing suicide give us
quality of life. The study reflects that caregivers of drug lots of worries.” (Caregiver 26)
abuse client had blend of negative feelings as Sadness,
anger, stress and guilt feeling. “Seeing him (my son) in hospital make us worried
about his health that he will be getting well or not.”
Sub Themes: (Caregiver 17)
1. Sadness:
It is an emotional pain associated with or characterized “I feel very much worried about his (my sons) future,
by feelings of loss, despair, helplessness, that what will happen with his future.” (Caregiver 22)
disappointment and sorrow. An individual experiencing
sadness may become quiet or lethargic and withdraw 4. Guilt:
themselves from others. Subject revealed feeling of Guilt is experienced by the caregivers in a way that they
sadness because of concern of decreased self care by feel themselves to be responsible for not paying proper
the patient, worry of the happening and future, and due attention to their clients earlier. Guilt as expressed by
to unexpected happening in life. Few of the responses few subjects is as follows:
171
 International Journal of Nursing Education and Research 4(2): April- June 2016
“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)
172
“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)
 International Journal of Nursing Education and Research 4(2): April- June 2016

“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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