Need for care to caregivers: Psychological distress and its
correlates among the relatives of persons with mental illness
of Psychiatric Social Work
Institute of Psychiatry
Pathak A & Mathew KJ. (2017) Need for care to caregivers: Psychological distress and its socio-demographic correlates among the
relatives of persons with mental illness International Journal of Psychosocial Rehabilitation. Vol 21 (2) 3-12
The present study aims to compare the presence of psychological
distress and its socio-demographic correlates among relatives of
patients with mental illness and general public in Jharkhand.
240 relatives of persons with mental illness and 240 general public
were assessed for psychological distress using Kessler Psychological
Distress Scale version 10 (K10).
Results: Psychological distress
found among half of the total respondents at various levels. Relatives
group reported higher levels of psychological distress than general
public. The Spearman rank correlation shows significant positive
correlation between psychological distress and gender, age, marital
status and significant negative correlation between education,
occupation and annual income.
The study reveals psychological distress is significantly higher among
the relatives group. It indicates the need for support and guidance to
the caregivers of persons with mental illness. More comprehensive
strategies are necessary to sensitize individuals about broad aspects
of mental health and motivating them for approaching treatment. At the
same time there is also need for strategies to provide affordable and
accessible care to the needy.
Key words: Psychological distress, care givers, relatives of person with mental illness, family, untreated mental illness.
distress is an outcome of various factors associated with an individuals’
social, psychological and biological make up and environment. It is found to be
associated with both physical and mental illness. The associations of
psychological distress with mental illnesses are found to be
bidirectional. That means the psychological
distress can cause a mental disorder and at the same time mental illness itself
may be the reason for psychological distress. The psychological distress may be
the overt manifestation of an ongoing mental illness. Previous studies had
found that socio economic conditions, social support, occupational and academic
pressure and work conditions, aging, violence, addictive behaviors, migration,
etc., may cause for psychological distress. Physical abuse, domestic violence,
separation, isolation caused by widowhood, infected by deadly illness etc, may
make women more vulnerable to psychological distress than men(Lindhorst, Oxford, & Gillmore, 2007; Torres & Wallace,
2013; Ferro, 2014; Liebana- Pressa et al, 2014; Shivkumar
et al,2015; Cascardi 2016; Duchaine et al, 2017; Kachi, Abe, Ando & Kawada, 2017).
of psychological distress can be an indicator for underlying mental illness.
Remain unaddressed it may cause for worsening in terms of severity and
dysfunction. The identification and appropriate management is important (Kessler
et al, 2003).
The relatives of
individuals with any kind of illness, whether it mental illness or
illness are more vulnerable to have psychological distress. The
associated with life threatening illness of the dear ones and the
associated with care giving and financial burden often complicate the
picture. By sharing a same genetic and
psychosocial environment, the relatives of the individuals with mental
are prone to have more psychological distress and mental health issues
(Al-Gamal &Yorke, 2014; Ae-Ngibise, Doku, Asante &
Owusu-Agyei, 2015; Sintayehu, Mulat, Yohannis, Adera & Fekade,
Sanuade & Boatemaa, 2015).
present study was conducted in the Hazaribagh district of Jharkhand and it was
a community based cross sectional study. The study carried out between the time
period of July 2014 to February 2016. Total number of participants in the
present study was 480 individuals consisted of 240 individuals living with a
mentally ill person (Group 1) and 240 individuals from general population
(Group 2). The sample size calculated on the basis of an approximate adult
population of 12 lacks in Hazaribagh district with an expected 20% prevalence
of mental illness as reported by the previous studies with a 95% confidence
level and 0.05 confidence interval (Math & Srinivasaraju,
Organization of India, 2011; Election Commission of India, 2014).Individuals
living with a mentally ill person at least for last two years and who are
either related with blood relations or marriage included in the group 1. The
individuals with no family history of mental illness, not living with a
mentally ill spouse, or a mentally ill child or any other person with mental
illness were included in the group 2. Individuals with any kind of known mental
illness, mental retardation, epilepsy, physical disability, chronic physical
illnesses, unable to give a valid response due to any kind of physical
limitation and age below 18 years and above 60 years were excluded from both
The study is carried out with the support of Nav Bharat Jagriti Kendra
(NBJK), a non-profit organization engaged in community psychiatry programmes in
Hazaribagh district. They also work for the development of underprivileged and
individuals with various disabilities in different part of Jharkhand. The organization shared a data base of more
than 1400 individuals with mental illnesses in Hazaribagh district, which
helped the research team to identify the relatives of mentally ill. To ensure
the specific inclusion and exclusion criteria the present study used purposive
sampling method. The respondents for general public group (group 2) were
recruited from the same locality of the relative group by request to
participate in the study. The data collected at the door step of the individual
respondent. Informed written consent obtained from all participants.
structured profile used for recording the socio-economic details of the
respondents. Kessler Psychological Distress Scale version 10 used for recording
the psychological distress (Kessler
et al, 2003). Kessler Psychological Distress Scale is a simple scale
consisted of ten questions with five levels responses to each question about
the emotional status of the respondent from ‘none of the time’ to ‘all of the
time’. A higher score in the measurement
indicates higher levels of psychological distress ranging from 10 to 50. The
measurement can be given to the respondent to complete or can be read to them
by the practitioners (Kessler,
2003). As per cut offs adopted by the 2001 Victorian Population Health
Survey, a score between 10 to 19 indicates likely to be well, a score between
20 to 24 indicates likely to have a mild disorder, a score between 25 to 29
indicates likely to have a moderate disorder and a score between 30 to 50
indicates likely to have a severe disorder (Victorian
Population Health Survey, 2001). The questionnaire used in its original form in English
language and the individuals who are unable to read and comprehend the
questionnaire were helped by the trained volunteers of post graduate students. Frequency
and percentiles used for comparing the socio-demographic variables, Mann-Whitney-u
test used for comparing the level of psychological distress between groups and
spearman’s correlation coefficient used for assessing correlations.
Table: 1 Socio- Demographic Profile of Relatives
&General Public N=480
1 Relatives of mentally ill people (n=240)
2 General Public
in years (between 18 to 60 years)
than 30 years
income in Indian rupees
to 1 lack
lack and above
As shown in table 1, large number of
respondents of both groups was from the age category of less than 30 years (33
% and51 % respectively). Females (56%) were majority in group1 and males (68%)
were in group 2 and most of them were from Hindu religion (84% and86%
respectively). Majority of the respondents belonged to nuclear families (53 %
and 59 %) and married (65 % and 80%). In group 1 majority were low educated or
illiterate (38 % and 27 %) whereas largest (40 %) number of respondents had an
education of matriculation or intermediate in group 2. In group 1 large number
(40) of respondents were unemployed and were earning income less than 25000
Indian rupees annually (44%). In group 2 largest (41%) number of people engaged
in business or professional works and were reported annual earning income
between 25000 to 1 lack Indian rupees (53%).
Table No2. Showing the presence and
comparison of psychological distress among the relatives and general public (N=480)
Significant at less than 0.001 levels
Likely to be well
Likely to have a mild disorder
Likely to have a moderate disorder
Likely to have a severe disorder
Mean score± SD
Mann Whitney U
General public (n=240)
table 2 shows nearly half of the total respondents reported to have psychological
distress at various levels and among them 21 % of the total respondents
reported likelihood for having severe disorder.
As per the scores shown in table No.2, 16% of the relatives are likely
to have mild disorders, almost 14% likely to have moderate disorders and 35%
likely to have severe disorders. Among general pubic it was 10% for mild
disorders, 7.5% each for moderate and severe disorders. The differences between
groups found to be statistically significant at p-value less than 0.001 levels
in Mann Whitney – U test.
Table No3. Showing Spearman’s
correlation between psychological distress and socio-demographic variables
**. Correlation is significant at the 0.01 level (2-tailed).
No.3 shows the details of spearman’s correlation analysis between psychological
distress and various socio-demographic variables. The psychological distress
positively correlated with gender, age and marital status. That means in
comparison to male, female gender is more vulnerable to have psychological
distress. Regarding marital status the psychological distress may increase from
unmarried to married to widow/widower/separated/divorced. Educational status,
occupational status and annual income found to be negatively correlated with
psychological distress score. It means when a person has better educational,
occupational and income status the psychological distress may be low and vice
present study reveals that the presence of psychological distress at various
severities among both study groups. The scores found to be higher among
relative group compared to general public. Considering from mild level, almost
65% the relative group reported to have presence of psychological distress
against 25 % in the general public group. It is also important to notice that
almost half of the respondents in relative group scored for moderate or severe
levels of psychological distress. The
present study used Kessler
Psychological Distress Scale for measuring psychological distress. The
measurement has used widely to identify common mental disorders and found have
very high reliability and validity and very least in various possible biases. A
high score in the measurement indicate the possibility of an identifiable
mental disorder. Higher the score higher the possibility of common mental
disorders and the illness severity. In that way almost half of the total
respondents are vulnerable to have some kind of mental disorders. In terms of
severity almost half of the respondents in relative group and 15 % of the respondents’
in general pubic group may have a common mental disorder with a severity of
moderate or severe levels (Kessler et al, 2003; Baillie, 2005). Previous studies reported that the
individuals are found to be reluctant to approach mental health facilities
because of various reasons including stigma. And at the same time lack of
knowledge and an inability to identify certain symptoms as mental illness or
mental health problem are also reasons.
usually understand severe
symptoms like violence, self-harm and grossly disoriented behaviors as
symptoms of mental illness. The symptoms if not presented with such
abnormalities, people may not pay attention. In that way many times the
and relatives might have brought individuals with psychotic disorders
mental health facility, but the illnesses with less severity such as
and somatoform disorders might have gotten ignored. The treatment
gap in India estimated between
ranges of 60-90%. That means a vast majority of individuals with mental
needs are not approaching any mental health facility and not receiving
support (Demyttenaere et al,
2004; Abbo, Ekblad, Waako, Okello & Mussi, 2009; Ham, Wright, Van,
Doan & Broerse, 2011; Mbwayo, Ndetei, Mutiso & Khasakhale,
2013; Sorsdahi, Flisher, Wilson
& Stein, 2010). The untreated mental illness and mental health
even in terms of stress will cost to the individual and society in
way. Firstly, it will cause for decreasing the functional ability of
sufferer at various levels. Secondly, it
will cause for impairment in social and personal relationships. It is
important that when parents of younger children have any trouble, the
care for them
will be affected and it may hamper their present life and future
the decreased ability in functioning may affect the individual’s
performance and they may get trouble at work place. Indirectly any
in the occupational functioning may lead to a negative impact in
production also (Patel & Knapp,1988; Kingston,
Tough & Whitefield, 2012; Kingston, McDonald, Austin & Tough,
2015). Mental disorder at level will lead
to dysfunction in psychosocial functioning of the individual. The
psychological distress in almost half of the individuals in the present
indicates the likelihood of common mental disorders at various levels.
untreated illness will be causing for huge loss for the country and
identification and management is important. There is a huge difference
general public and relatives who are living with mentally ill people
indicates the need of strategies to identify the problems of the care
and interventions to support them.
The correlates of the psychological distress
indicate some of the remedial steps in a broad psycho-social frame work. It
indicates the various domains in which they need help and support. As per the
findings, the female gender is more vulnerable to psychological distress. Here
it becomes a very complicated issue to discuss as there may be various
mechanisms. The earning member of the family itself creates lot of disparity.
In many families male may be an earning member and when a male member develop
mental illness the family may lose their source of income. To compensate the needs many time the female
members may go for various kinds of jobs, for which they may not be prepared. In
another situation, the male members may be irresponsible to the family
responsibilities and by force or for no other chance the female members may go
for jobs. A third condition maybe the woman going for job as per her own will.
In most of the cases the females will be key care taker for the patient and
they will be overburdened with the care taking and duties. Other specific
vulnerabilities for a woman to have more psychological distress are all kind of
abuses, societal attitudes, socio-cultural, religious and political biases, sex
related health issues etc. Strategies to reduce gender differences, gender
related violence, healthier attitude and favorable support from society may
help to bring down the severity psychological distress among female population (WHO,
2000; Ramiro, Hassan
& Peedicayil, 2004; Vizcarra
et al., 2004; Kingston et al., 2015).
Present study also found that the psychological distress
increases with age among the referred population. The reasons can be many such
as more responsibilities associated with family and work, poverty and
unemployment or uncertainty about job (Fukuda & Hiyoshi, 2012; Wang & Wang, 2013). Being unmarried is
associated with lower psychological distress and being a widow/widower or
separated or divorced is associated with higher psychological distress. Various
studies investigated the association between marriage and psychological
distress and the results are contradicting. In most of the studies it was found
that loss of partner, being separated/ divorced is associated with highest
level of psychological distress as like in the present study. Being single or married and its relationship
with psychological distress found to be non-conclusive and different studies
gave different opinions. The specific features of the sample such as age,
socio-cultural background, social support etc., may have significant role in
this. The increased responsibility such as job, care taking of the ill members,
taking care of the children and stigma may also play important role (Hope,
Rodgers & Power,1999; Darghouth, Brody &
Educational status also found to be
correlated with psychological distress in the present study. Education plays
the role of brushing out unawareness, increases the possibility of better life
by helping a person to get high salary jobs. It help the individual to develop
a set of skills and abilities to live better in the society (Araya, Lewis,
Rojas & Fritsch, 2003; Zhang,
Chen, McCubbin, McCubbin & Foley, 2010; Vijaylakshmi, Reddy, Math
& Thimmaiah, 2013). The unemployment creates
helplessness in supporting the family, their fooding and lodging, education,
medicines etc., which compels the person to take risky, uncertain jobs and
creates distress (Hoeing & Hamilton, 1966, Araya et al, 2003; Zhang et al, 2010; Cadieux
& Marchand, 2014; Boschman, VanderMolen, Sluitor & Fringe- Dressen, 2013; Natalie, Ian, Steve &
Paul, 2003). Income obtain from
occupation also determines level of distress. In the present study the low
income found to be correlated with psychological distress. Low income causes
inability to perform the function as normal member of the society which
includes the maintaining the day today needs of the family, education of
children, health care needs, lifestyle and other comfort needs (Araya et al, 2003; Zhang et al, 2010; Lazzarino,
Seubsman, Steptoe & Sleigh, 2014; Caron & Liu, 2011;
Pongsavan, Chey, Bauman, Brooks & Silave, 2006).
The subjects of the present study are not
recognizing that they have any mental illness or problem and hence not
for help. In this context a strategic intervention to spread awareness
the population about mental illnesses and mental health problems and
them for consultation is important. The
knowledge should be broadened and the barriers in approaching treatment
facilities should be addressed. Ongoing illness and problems associated
psychopathology, burden in different domains, poor coping, lack of
support and the shared genetic vulnerability may be causing for
of psychological distress among relatives (Engel, 1977; 1978; Scottish
Group, 1987;1988; Ostman & Kjellin, 2002; Kohn,
Saxena, Levav, Saracen, 2004; Schulze & Rossler, 2005; Sanuade
& Boatemaa, 2015; Sintayehu, Mulat, Yohannis, Adera &
The socio-demographic correlates found in the present study may have
implications on developing helping strategies for the relatives and
public in different ways. Strategies for lowering gender inequalities
gender related violence and support to woman is very important. There
strategies to promote better education and job opportunities to woman.
participation in house hold activities should be increased. The mental
facilities should be available locally as part of primary health care
should be strategies to make individuals generalize it as like any
physical illness. The individuals should be motivated to speak about
mental health related difficulties and benefits from the treatment.
and accessible care, promising results from treatment strategies,
education about all aspects of the illness, specific training in
management skills etc., may help the individuals and relatives to cope
with the illness and situations. Support should be provided for
wellbeing through various skills training programmes especially
skill training, job search and other income generation activities. The
to the caregivers and distress associated with can be reduced
providing facilities for day care, half way homes and self-help groups.
limitations of the study which have been observed are the data of the study was
unmatched for all variables such as gender, caste, age, occupation, education
etc. The generalization becomes difficult as researcher used purposive
sampling. There may be separate specific vulnerabilities for relatives and
general public to have psychological distress, which is not addressed in the
present study adequately. Also even with severe level of distress, why people
especially the relatives are not approaching for treatment as it is available
at their reach is also not answered. There is need for more studies using
better sampling strategies to address such issues which will bring more clarity
to the policy makers and professionals to address these issues more
conclusion, present study brought many significant findings despite having
limitations discussed above. The study reveals the possibility of presence of
unidentified psychiatric morbidity among the study population. All the
participants in the present study never approached any mental health facility
for help and may remain with their problems if no interventions initiated. A
systematic and comprehensive strategy needed for sensitizing the community
against their needs. There is need for more attention to provide proper,
affordable and accessible care to the community.
Conflict of interests: On behalf of all authors
the corresponding author states that there is no conflict of interest
Acknowledgements: We are thankful to all our participants and
Nav Bharath Jagrithi Kendra (a non-profit organization based in Hazaribag,
Jharkhand) for their support and cooperation to complete this study. We also
thank Dr. Ronald C. Kessler for permitting us to use ‘Kessler psychological
distress scale-version10’ for current study. Heartful thanks to our batch mates
and friends for extending their support in data collection.
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