899978

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ISP0010.1177/0020764019899978International Journal of Social PsychiatryAkgül Gök and Duyan

E CAMDEN SCHIZOPH

Original Article

International Journal of

‘I wanted my child dead’ – Physical, Social Psychiatry

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spiritual life stories of Turkish parents DOI: 10.1177/0020764019899978

https://doi.org/10.1177/0020764019899978
journals.sagepub.com/home/isp

who give care to their children with

schizophrenia: A qualitative analysis
based on empowerment approach

Fulya Akgül Gök and Veli Duyan

Abstract
Background: Schizophrenia deeply affects both the lives of patients and their families. The fact that schizophrenic
patients in Turkey generally maintain their lives with their families may lead to serious problems for families and
parents.
Aims: The main purposes of this research are to determine the physical, social, cognitive, emotional and spiritual lives
of parents of children with schizophrenia with the main concepts of the empowerment approach.
Method: The research was carried out with the qualitative research method. In-depth interviews were conducted with
30 parents in total, that is, 15 mothers and 15 fathers, through semi-structured interview form. Maxqda 2018 was used
for the analysis of the research data.
Results: According to the research result, it is determined that the parents have problems due to physical, social, cognitive,
emotional and spiritual disease process; gender perspective and roles; domestic functionality; social environment, social
perception; and issues related to services.
Conclusion: Considering the parents who are affected by the disease process which is a particularly quite difficult
process and who affect the process, to recognize the situations that lead them to gain strength and that make them
powerless in personal, interpersonal and political aspects, to activate the existing resources and to create new resources
are highly important factors for them to cope with the disease process effectively.

Keywords
Empowerment approach, life, parent, schizophrenia

Introduction himself/herself powerful or powerless, the inability to use

Schizophrenia deeply affects not only the patient but also
the family and social environment of the patient, and espe-
cially affects the mental, physical, emotional, cognitive
and social aspects of parents who give care and live with
the patient. Besides the medical treatment process of the
patient, disease process affecting the life processes of the
parents living with the patient lead these individuals to
have different experiences in their spiritual, physical, emo-
tional, cognitive and social fields. The variables affecting
the family and social environment of the individual and
himself/herself in this context, self-efficacy, self-control,
feelings and thoughts attributed to himself/herself are
among the factors that make the individual powerful or
powerless. Being unaware of the variables making
resources effectively or to have insufficient resources
around prevents the individual to realize his or her poten-
tial strength or to use it. This situation comes with feelings
including helplessness, burnout and inability to get pleas-
ure out of life.
Schizophrenia is a mental disorder that causes changes
in the emotions, thoughts and behaviors of the individual
Department of Social Work, Faculty of Health Sciences, Ankara
University, Ankara, Turkey
Corresponding author:
Veli Duyan, Department of Social Work, Faculty of Health Sciences,
Ankara University, Tepebaşı, Fatih Cd. No:197/A, PK:06290 Keçiören,
Turkey.
Emails: vduyan@health.ankara.edu.tr; duyanveli@yahoo.com
2 International Journal of Social Psychiatry 00(0)
and accordingly affect the lives of both the individual and
the people around her or him (Çam & Dülgerler, 2006; C.
Lee et al., 2005; Öztürk & Uluşahin, 2011). In this study,
the experiences of parents were evaluated within the
framework of physical, social, cognitive, emotional and
spiritual dimensions of development on the basis of the
empowerment approach. Empowerment is not just per-
sonal, but it is also a comprehensive tendency involving
proactive engagement in social and political systems
(Rappaport, 1987). The empowerment approach points out
the impact of the stressful situations caused by social ine-
qualities and environmental conditions on the individual
(Gutierrez, 1990; Simon, 1994). Scheel and Rieckmann
(1998) stated that the empowerment approach is highly
important in eliminating or mitigating the problems faced
by parents. Effective engagement of the individual in the
treatment process can be considered as an important out-
come of empowerment. According to Vandiver et al.
(1995), family empowerment is a dimensional concept
composed of two parts: ‘Empowerment level (family, ser-
vice system, political level) and expression of empower-
ment (attitude, knowledge, behavior)’. The important
point to be considered here is the requirement of empower-
ment at micro, mezzo and macro levels. The empower-
ment approach encourages patients and families to actively
participate in providing mental health services and keeps
them informed (Solomon, 1994). Webster-Stratton (1990)
stated that internal perceptions of stress, family support,
stress caused by the child’s condition and the effects out-
side the family may affect the self-efficacy and empower-
ment process of parents. Linhorst (2006) underlined that
the increase in the sense of empowerment is related to life
quality, self-confidence, social support and self-esteem.
The inclusive or ecological evaluation consists of the
evaluation of all intrapsychic, interpersonal and environ-
mental factors in the environment (Derezotes, 2000). In
this study, the experiences of the parents were evaluated
in five developmental dimensions of the individual includ-
ing physical, social, cognitive, emotional and spiritual
dimensions.
Method
As a result of the literature review on the subject, it is seen
that there is no study examining the lives of parents of
patients with schizophrenia in terms of physical, social,
cognitive, emotional and spiritual dimensions in a holistic
way and evaluating their lives from the point of the
empowerment approach. In accordance with this informa-
tion, it was found necessary to evaluate the lives of parents
of children with schizophrenia with the main concepts of
the empowerment approach and to determine the percep-
tions, feelings and thoughts of parents about the processes
they experienced. In life story interviews, what is dis-
cussed in-depth is the life events of interviewees (Kuş,
2012, p. 88). Accordingly, the research was carried out
with the qualitative research design.
In this study, phenomenology design was used. The
phenomenology design focuses on the phenomena that
‘we are aware of but do not have an in-depth understand-
ing’ (Yıldırım & Şimşek, 2013, p. 78).
Sample
In this study, the study group consists of the parents of
individuals with schizophrenia who get service in a
Community Mental Health Center in Ankara, the capital
city of Turkey. In determining the individuals who will
participate in the research, no classification was made in
terms of variables such as socio-cultural, economic status
and educational level and the status of the individuals in
terms of a specific life cycle that they are experiencing
was not considered. The reason is that it is aimed to ena-
ble the evaluation of the processes experienced by indi-
viduals ‘within the framework of differences’. Individuals
to be interviewed in this study were selected through the
Community Mental Health Center because it was aimed
to ensure the evaluation of these centers in terms of the
individuals to be interviewed in this context. The other
reason is that these centers aim to reduce stigma for
patients and their families by supporting care on the basis
of society rather than the institution care, and finally it
was aimed to try to understand to what extent the services
provided to families in these centers contribute to the lives
of families.
It was stated that the children of the parents who partici-
pated in the research process had been received schizo-
phrenia treatment for at least 5 years. In the first phase of
the study, it was planned to conduct in-depth interviews
with the parents of the first episode patients; however, only
the parents of the two patients were reached and they did
not want to make an interview.
In accordance with this information, this study was
completed by interviewing 30 people, 15 women and 15
men, who have children with schizophrenia. The age of the
fathers who participated in the study was between 47 and
74 years and the mothers were between 45 and 65 years of
age. The education status of the participants were as fol-
lows: five of the fathers were university graduates, eight
were high school graduates and two were primary school
graduates; three of mothers were university graduates, five
high school graduates, three were middle school graduates
and four were primary school graduates. As for the work-
ing status of the participants, it was seen that most of the
fathers were working at an income-generating work
despite their retirement; that two mothers were working at
an income-generating work, two mothers resigned after
their children were diagnosed with the disease, and one
mother started to work at an income-generating work
again after resigning.
Akgül Gök and Duyan
Procedure
The research was carried out in Ankara between 2015 and
2018, but the data of the research were collected between
September 2016 and April 2017. This study was approved
by Ethics Committee of Ankara University.
In-depth interviews with parents were made in places
that would allow the participants to share their feelings
and thoughts freely. This place was mostly the reading
room of the community mental health center. On the
contrary, interviews with the individuals who could not
get permission from the place where they work were
conducted in the workplaces of these individuals. The
shortest of the in-depth interviews lasted 50 minutes and
the longest lasted 165 minutes. The longest interviews
were made with women and the shortest interviews were
made with men. During in-depth interviews, women
expressed their feelings and thoughts more intensely
than men.
Analysis
The data were collected through in-depth interviews with
the semi-structured interview form prepared by the
researcher. The data collected from the participants were
analyzed by the researcher. Maxqda 2018 was used for the
analysis of the research data.
Tape records obtained as a result of the interviews with
a total of 30 participants were written out. This text was
approximately 1000 pages. Data were analyzed according
to thematic analysis method. As a result of a comprehen-
sive literature review, the main themes and sub-themes of
the research were determined in accordance with the
objectives and the theory of the research. After all the
interviews were made, the texts obtained from the inter-
views were read again and again, and the necessary
arrangements were made in the main themes and sub-
themes. The main themes were determined in relation to
the setup of the research in the context of the changes in
the physical, social, cognitive, emotional and spiritual
lives of the parents and the factors affecting the empower-
ment/disempowerment process.
Results
As a result of the analysis of the research findings, the
physical, social, cognitive, emotional and spiritual experi-
ences of the parents are included under the theme of
‘Experiences of Parents in the Focus of Empowerment in
Post-Disease Process’.
Experiences of parents in the focus of
empowerment in post-disease process
In this section, the factors affecting the empowerment pro-
cess of the parents are evaluated in terms of physical,
3
social, cognitive, emotional and spiritual dimensions of
development.
Physical dimension
The stress on parents due to the physical difficulties of the
disease changes the way of lives of the parents to a great
extent and causes the individuals to become powerless. It
is seen that patients maintain their lives with their families
and this limits the area of physical freedom of the parent
who is in direct contact with the patient. Under these phys-
ical limitations and difficulties, some parents make an
effort to try to turn the existing situation into positive out-
comes, while others shape their lives according to the flow
of the existing negative situation. In this regard, the role of
the internal and external elements that satisfy parents has
great importance.
The support of the spouses to each other is very empow-
ering for mothers who take almost all care responsibilities
of the child with schizophrenia:
I know he would help me never in a thousand years! Because
he has always belittled whatever I did. Not to speak of helping
me, I would be so happy if only he just says ‘Do you need
anything?’ (Pine – Mother, 55)
The reactions and behaviors of parents who have no or
insufficient knowledge about the disease and its symptoms
may make the situation more difficult:
Sometimes I say ‘Who is this child? Is he my child?’ He hits,
destroys. He even attacked me. How can I tell what I’m
experiencing, I mean I can’t tell. For example, I feel anxious
when I am alone with him at home because he slept with an
ax, knife and iron sticks in his room many times. He disturbed
us in Bolu, the first incident happened in Bolu. He said ‘I
bought two knives, I’m going to kill you’. His father said
‘Why did you buy two my son, why did you make expense?
Bring one and kill both of us with the same knife’. (Willow –
Mother, 55)
One of the issues to be considered within the framework of
the physical dimension is the patient’s sexual needs.
According to the degree, symptoms and course of schizo-
phrenia, for some patients marrying or maintaining the
relationship may adversely affect the course of the disease.
Some families do not know what to do about this situation
of the patient:
Now he sometimes says that he wants to marry. So, we don’t
go a wedding if it is not a wedding of relatives or friends.
Because he wants, desires. However, such issues are not
spoken much in our family. I mean, I really don’t know what
to do. (Daphne – Mother, 55)
Some parents stated that they had first noticed the changes
in their child but could not understand them. The parents
4 International Journal of Social Psychiatry 00(0)
stated that they sometimes reacted to these changes with
anger or even punished their children. These parents stated
that they had acted in a quite wrong way when they looked
back and expressed this with the following words:
Some exacerbation states were occurring, then we were
probably acting tough unintentionally, but we learned that
it wouldn’t be good and that it isn’t good. Then we gave
positive reactions as much as possible. (Beech – Father,
73)
Social dimension
The social environment and the relationship with the social
environment are an important source of power for the
individual.
After the diagnosis of the disease, in some families, the
spouses begin to question the cause of the disease.
Sometimes this questioning is directed at spouses and they
can blame each other or their root families:
There was a continuous blaming, every time, over and over
again. That our son’s disease stems from me. As such, there
was no such thing as relationship anyway, faded away fully.
(Pine – Father, 65)
The negative and stigmatizing statements of the commu-
nity about mental diseases can hurt parents’ feelings, even
if they are not directed toward them, and parents can make
these negative statements personal:
When friends talk about such diseases or when they say crazy,
of course, I don’t defend immediately. This hurts me a lot. I
mean, when they say crazy, this word really hurts me a lot.
Actually, they don’t say anything about my son. But I take it
personally and attribute to my son even if it is said for
someone else. So, I think that I should not be among these
people. All these starts to seem to me nonsense. (Daphne –
Mother, 55)
The great majority of the parents who participated in the
research stated that their relatives did not want to meet
with them after the diagnosis of the disease:
Many relatives used to come to my house. After my child
became ill, they never came. My relatives don’t stand by me.
They don’t come or come rarely. They call once a year. My
sister even said, I’m scared. For example, they are afraid of
talking and can’t talk. He (patient) gets angry at people who
talk a lot. He gets angry at long talks. He talks to himself.
Then what happens? We get anxious. The guest also gets
anxious. (Plane – Father, 66)
Some of the parents who participated in the research stated
that they are pleased with the mental health professionals,
but that other hospital staff act in a negative manner to the
patient and the family:
The specialist physicians are very good and well-trained
people because I know they give very informative information
to both the patient and us about the disease. We saw, we
experienced. Unfortunately, we saw and worried that some of
the staff, for example, the caregivers, were not well-trained
and that they were rude against the family or the children. But
I didn’t see this as a big problem. (Beech – Father, 73)
Cognitive dimension
Within the framework of the cognitive dimension, coping
strategies of parents are discussed. Using both coping
strategies to eliminate or minimize the difficulties experi-
enced by the parents enables them to activate personal and
interpersonal power elements, to interact with resources,
to connect with their own existence and to increase self-
confidence and sense of control.
Having information about the situation that they are in
can be considered as one of the factors that positively
affect the empowerment process of parents:
Once you will determine the difficulty. You will learn what to
do to overcome this difficulty. For example, as a doctor do
you treat a patient without a diagnosis? First, you diagnose,
what is the disease? Then you treat it. Like him. What is this
difficulty resulted from? Then how can I overcome this
difficulty? You look for a way to solve them. And I never use
unlawful means. I explored what we should benefit from in
the treatment of the disease. (Olive – Father, 66)
Some of the parents who participated in the research stated
that more comprehensive services should be provided for
families, that families’ opinions should be listened and that
health professionals should be more thoughtful and sensi-
tive to the patient and family:
Sometimes they can ignore the family. However, the family
has great importance in this process. Because the family is
always together with the patient. Most of the time, it seems
like the patient and family are unimportant for the doctors. We
need understanding, no one could know what we’ve been
through. (Oak – Mother, 45)
Humor is also among emotionally focused coping strate-
gies. Very few parents use humor as a tool to struggle
against difficulties and physical challenges of the current
situation. These individuals think that life is temporary and
that whatever happens to them will end after a while. They
cope with the current situation by joking and laughing:
I’ve always been a person who likes to live. I was a cheerful
person before. And now I’m joking about something. I’m
joking, I’m laughing. Somehow time is passing. (Spruce –
Mother, 56)
The self-efficacy and the value that an individual gives
himself/herself are among the factors that determine the
Akgül Gök and Duyan
coping strategies of the parents. Therefore, if the person is
aware of his or her internal power elements, he or she can
cope with the current situation by developing emotionally
focused coping strategies. On the contrary, parents who are
not aware of their personal and interpersonal power
resources may try to cope with the situation by chronic
crying behavior or alcohol or drug use:
I was heading for a fall some time, I hit the bottle. How much
I cried because of the disease. Think that a person is crying
and drinking all the time. Then I said that it would not work
like this, I need to engage in other things. (Olive – Father, 66)
Even though some parents do not believe in psychic pow-
ers, they can see them as an alternative way. Some of the
parents also use non-medical means although they take
their children to doctors who are specialist in their field. It
can be said that the sense of helplessness is among the
causes of these actions of parents:
Look, how old am I now? I’ve never gone in my life. I had
surgery two times . . . Now the hodja prays and says ‘Tighten
your foot’. The child tightens his foot. Then he says ‘Loosen
slowly’. He says ‘Is it ok?’ Then I got very angry. I stood up
right away. I pulled fifty liras from my pocket and said to him
‘Take this and get the hell out of here’. Someone suggested
and we did so, but this hodja is not good. We went to Nevşehir.
He said bla bla. I don’t believe in hodja. (Cedar – Father, 66)
When the research findings are evaluated in general, it is
seen that socio-economic level, education level, social
environment relations, personal power and family rela-
tions are the determinant factors for the coping strategies
used by the parents.
Emotional dimension
Emotional dimension includes the emotional and psycho-
logical process of the individual. Emotions have a highly
important role in shaping the life of a person. After the
diagnosis of the disease, the emotional domain of the par-
ents is influenced by the many systems surrounding the
parents. Parents’ gender, socio-economic level, education
level, social support systems, family relations, root family
structures and personal characteristics are important deter-
minants of the emotional domain.
Some of the parents stated that they did not want to
accept the disease after the diagnosis of the disease. It is
remarkable that a few of the fathers, especially who have a
son, did not want to accept the disease. It can be thought
that fathers did not want to accept the disease due to the
perception in society that masculinity is related to power
and that a mental disease that makes the individual power-
less cannot be the case for men. Consequently, it can be
said that the mental disease that occurs in the male child
causes more sense of failure for fathers than mothers:
5
Yes, I didn’t want to accept my son’s condition. I still can’t
accept it. I mean, he’s the only boy in the family. How can I
accept it? (Pine – Father, 65)
When the doctor told us that he has schizophrenia the world
crash about our ears. What are we going to do now? A chill
ran down my back! We were very miserable. I wonder if
there’s someone else like me in Turkey? That ia to say, you
think both about the child and about yourself. How am I
supposed to spend time with him? How will I do? (Juniper –
Father, 60)
Well, let me tell you like this that my life became upside-
down. (Sweetgum – Mother, 45)
For some parents, the child is an individual who gives
them the possibility to make their dreams, which they
could not live out in their lifetime, come true. The meaning
that the parents attribute to their children can also present
a part of their own existence. Therefore, the occurrence of
schizophrenia may lead these parents to have great frustra-
tions, to feel inability and failure:
Well, I say I’m strong, I can do this. But until when? When I
think about it, uncertainties are rolling up in front of me. I say
what am I going to do. (Sweetgum – Mother, 45)
I had dreams. Now I feel like I’ve failed. (Cypress – Father,
50)
The statements of the parents who participated in the
research distinctly exhibit some feelings including
anger, pity, desensitization, aggression, suspicion,
loneliness, helplessness, inability, burnout, insecurity,
stress, regret, fear, anxiety, failure, shame and uncer-
tainty and also decrease in sense of control, self-effi-
cacy and self-esteem:
I am feeling so sad that my son didn’t deserve this. The sturdy
boy closed his heart. Every good day of him passed between
the four walls. (Cedar – Mother, 62)
I mean, as a father, our world became upside-down.
(Hornbeam – Father, 63)
I feel so unable and helpless! (Cypress – Mother, 52)
Some of the parents stated that the negative emotions that
they experienced at the beginning faded away later on in
the disease process:
At first, I can’t tell you how felt terrible. I wanted anyone see
or know. Now I’m greeting with everyone. I am in contact
with everyone. I’m saying this . . . My son is the badge on my
neck. That is to say, I don’t ever need to hide him. I’m not
ashamed. But it is a difficult process, so . . . (crying) (Daphne
– Mother, 55)
6 International Journal of Social Psychiatry 00(0)
The feelings of helplessness and uncertainty in parents
begin to increase as the disease process progresses. This
may lead the parents to experience a sense of burnout and
not to get pleasure out of life:
Sometimes I say if only God takes my life and save me. I feel
so exhausted and tired. I don’t want anything. Sometimes I
say, either he or I go away. That is to say, I want him dead!
Can a mother think like this, but sometimes I think. Then I
feel guilty. (Sweetgum – Mother, 45)
According to the findings of the research, it is seen that
parents strive against many negative feelings during the
disease process. On the contrary, some parents stated that
the disease process also leads them to experience positive
feelings about themselves.
The positive and negative feelings of the parents are
shaped by the systems in which the parents interact in their
lives, their characteristics, their perspective for life, their
education level, their economic situation and cultural
structure in which they exist.
Spiritual dimension
Many individuals may have some existential questions
during some processes of their lives which they think as
milestones. Most of the parents whose children were diag-
nosed with schizophrenia question the life, themselves and
the disease during the disease process. Parents’ commit-
ment to a ‘thing’ in their spiritual life and the value and
meaning attributed to that ‘thing’ contribute to their ability
to cope with the difficulties they face, no matter how dif-
ficult the process is. At this point, parents’ commitment to
an almighty power or a ‘thing’, their effort to make sense
of the current situation and the search for meaning in life
activates their internal power elements.
Parents whose children were diagnosed with schizo-
phrenia had some inquiries in their opinion after they had
overcome the shock of the diagnosis. Some of them acti-
vate their internal sources of power by expressing that the
disease is a trial and the disease process can teach them.
This idea, which is also related to the parents’ belief in
God, leads to the idea of accepting everything that comes
from God:
I don’t know, God tests his beloved servant somehow.
(Hornbeam – Mother, 57)
I said that if I am the beloved servant of God, he may give it
to me. I wasn’t offended by it. God tests me. What’s been
done can’t be undone. (Plane – Father, 66)
If God gave me this child to me, it’s not for nothing that. Did
I have a bargain with God while he was creating me? I mean,
I will take a lesson as well as kith and kin take. I mean, you
will increase your tolerance. Nothing is a coincidence.
Absolutely, there is a reason, so if our child has become like
this. (Birch – Father, 55)
The disease is also a test for human. (Linden – Father, 54)
After the diagnosis of the disease, a great majority of par-
ents question themselves and life. In this period, parents
try to find meaning in life through such questions ‘Why do
I live?’, ‘What is my aim in life?’, ‘What are the values
that I am committed?’, ‘What did the disease process bring
to my life or what did it take from my life?’. The existen-
tial questioning of parents also helps them to recognize
their own strengths and weaknesses.
In the process of questioning the life, parents’ devotion
to God or the value and meaning that they give to anyone
or anything may allow parents to find meaning in the dif-
ficulties that they experienced and to hold on to life.
Hope is an indicator that life goes on for people and
everything may be possible as long as life goes on. Some
of the parents who participated in the research stated that
they could not live without hope and that there could be
many miracles in life:
People breaks down without hope. (Birch – Mother, 50)
Life doesn’t go on if there isn’t hope. (Beech – Mother, 65)
My life become upside-down when I sink into despair. (Olive
– Mother, 65)
Some of the parents who participated in the research stated
that nature is an important source of power. In addition to
this, the commitment of a person to his or her relatives and
loved ones is also very important for the parents:
It is very important that you have someone who gives you a
leg up in this process. (Linden – Mother, 50)
Some mothers who participated in the research stated that
being ‘woman’ made them feel strong. Being able to sur-
vive by standing up to difficulties and not giving up the
struggle and being independent are among the sense-mak-
ing considerations of the mothers related to power:
I suppose that power means ‘me’. I don’t know, I’ve always
been struggling since I was a child. That is to say, I suppose
that to be powerful means to exist. So glad we have been
women, so glad we have given birth. (Pine – Mother, 55)
Discussion
Evaluation of an individual in a holistic way requires to
evaluate all systems and sub-systems that he or she is in
contact. On the contrary, evaluation of the personal, inter-
personal and political sources of power of the individual or
the elements that make the individual powerless in these
Akgül Gök and Duyan
areas are also very important. In this context, in this
research, the lives of parents of patients with schizophre-
nia are evaluated in a holistic way in terms of physical,
social, cognitive, emotional and spiritual dimensions and it
was aimed to determine the factors that make parents pow-
erful and powerless.
Physical dimension
It was observed that the parents who participated in the
research, especially mothers, experienced quite big diffi-
culties in the physical dimension. Chou (2000) stated that
gender roles determine and differentiate the role of women
and men in giving care. Accordingly, he expressed that
women are obliged to take more responsibility to provide
care directly than men.
Being in the house all the time and spending almost the
whole time with the patient limits the physical area and
freedom of mothers. Some researches support this finding
(Scazufca & Kuipers, 1998).
It was seen that the fact that the patient did not accept
his or her disease and did not want to go to the hospital
lead the parents to experience difficulties in the physical
dimension. In some studies, it was observed that family
experienced difficulties due to the patient’s behavioral
problems which are seen particularly during the exacerba-
tion of the disease, the verbal and physical violence shown
by the patient to the family members and the inability of
the patient to perform his self care skills time to time (Avcı,
2001; Boye et al., 2001; Doornbos, 1997; Östman and
Hansson, 2001; Scheirs & Bok, 2007).
In the research, it was seen that one of the important
factors affecting the empowerment process of the parents
was the economic status of the family. Some studies
proved this finding (Ferrario et al., 2001; Fink, 1995;
Magliano et al., 2005).
Some of the fathers who participated in the research
stated that the conflicts with his wife increased after the
disease period, that his wife did not allocate time for him
or the family members and that their sexual life was almost
over.
Social dimension
Within the scope of the research, it was observed that the
positive relationships with family, relatives, friends and
health professionals had a highly empowering effect dur-
ing the disease process. In some studies, it is stated that
satisfactory social support is considerably important for
the families of the patients (Chien et al., 2008; T. C. Lee
et al., 2006; Magliano et al., 2000).
It was observed that some parents prefer to hide the dis-
ease. Some researches support this finding (Lanzara et al.,
1999; Zauszniewski et al., 2010).
7
It was observed that some parents who participated in
the research did not want to have a child again after their
child being diagnosed with schizophrenia, that some par-
ents have had a child once again due to their will to have a
healthy child.
Considering the relationship of parents with their chil-
dren, it was seen that some parents wanted to spend more
time with the ‘healthy’ child. This tendency is more com-
mon in fathers who participated in the research.
One of the factors that affect the empowerment process
of the parents is the quality of their relationship with health
professionals. Caqueo-Urizar et al. (2017) stated that the
relationship between family members and health profes-
sionals is very important especially after the diagnosis of
the disease and that this affects the perception of burden.
Cognitive dimension
Coping is defined as the problem-solving efforts of an
individual to manage a stressful situation (Rungreangkulkij,
2000; Szmukler et al., 1996). In the research, it was seen
that the parents benefited from emotional and problem-
focused coping strategies to cope with the difficulties they
experienced.
The problem-focused coping strategies used by the par-
ents who participated in the research include the follow-
ing: making research and examination about schizophrenia;
investigating the symptoms of the disease and learning
how to treat the patient; having information about the ser-
vices in the field of mental health; researching non-gov-
ernmental organizations, associations and other
organizations in the field of mental health; reading and
watching qualified radio-television programs; and partici-
pating in panels or conferences about mental diseases. All
these actions positively affect the empowerment process
of parents.
One of the emotionally focused coping methods used
by the parents who participated in the research is the reli-
gious belief of the parents. It was seen that the belief that
the disease comes from God and the ‘causal attributions’
for the disease positively affect the empowerment process
of the parents. Gibson (1995) states that the belief system
of the individual is highly effective in dealing with the dif-
ficulties that he or she faces and that the belief in God or an
almighty power positively affects empowerment process
of parents.
It was seen that the idea of death and the expectation
that life would end one day was an important coping tool
for some parents even though the sense of death may cause
fear and uncertainty for some people.
For some parents, humor was seen as an important tool
for parents to cope with the difficulties they experienced.
In a study by Bishop and Greeff (2015), humor was found
to be an important coping tool.
8 International Journal of Social Psychiatry 00(0)
Emotional dimension
It was seen that most parents had observed the difference
in their children’s behaviors and that had realized there
was something wrong before their children were diag-
nosed with the disease.
Parents whose children were diagnosed with schizo-
phrenia stated that they experienced a shock at the begin-
ning. Some researches support this finding (Caqueo-Urizar
et al., 2017; Gibson, 1995; Nyström & Svensson, 2004).
It was seen that some parents did not accept the disease
or reject it for a long time after the diagnosis of the disease.
Although this was seen in both mothers and fathers, it was
observed that especially some fathers did not accept the
disease in case of the diagnosed child is male. Wancata
et al. (2008) stated that for fathers, having a child with
schizophrenia is a ‘humiliating status’ and they have diffi-
culty in accepting this situation.
It was observed that the parents who participated in the
research felt some feelings including anger, pity, desensiti-
zation, aggression, suspicion, loneliness, helplessness,
inability, burnout, insecurity, stress, regret, fear, anxiety,
failure, shame and uncertainty and also decrease in sense
of control, self-efficacy and self-esteem during the process
started with the diagnosis of the disease and after. Özlü
et al. (2015) stated that caregiving experience of the
person who provides care to the patient increases in the
advancing processes of the disease and they can manage
stress better and they gain power.
Spiritual dimension
It was observed that parents who participated in the research
have questioned their past life, theirselves, their children
and the disease after the diagnosis. It was determined that
parents’ commitment to a ‘thing’ in their spiritual life and
the value and meaning attributed to that ‘thing’ by them
contribute to their ability to cope with the difficulties they
face, no matter how difficult the process is.
It was seen that parents’ commitment to a ‘thing’ and
the value and meaning that they attributed to that ‘thing’,
their effort to make sense of the current situation and of the
disease mostly activate their internal power elements.
Accordingly, it was determined that the belief systems of
parents, the religious rituals they made and the search for
meaning in their life contributed positively to the empow-
erment process. Addington et al. (2005) stated that one of
the most important issues about caregivers was cognitive
evaluation processes for caregivers, that is, they stated that
how caregivers interpret and make sense of the disease is
very important.
It was determined that the parents’ belief system
empowers them. Jonker and Greeff (2009) stated that
spirituality and religion are very important resources for
families to cope with the difficulties.
It was seen that the parents who thought that the disease
came from God and accepted it had a less feeling of shame
about the patient and the disease. In the study by Demir
(2013), it was observed that the belief that the disease is
given by God was effective in reducing the feeling of
shame of caregivers.
Another important finding in the research is that nature
has a healing and empowering effect. It was seen that the
greatness of nature and the commitment of parents to
nature have a positive effect on the process of empower-
ment. In the study by Bishop and Greeff (2015), the great
majority of individuals participating in the study stated the
spirituality as an important element in adapting to the dis-
ease and the patient.
It was seen that the concepts such as ‘being healthy’,
‘hope’ and ‘loving life’ were used by the parents to define
power. In addition to this, when the question of ‘What
power means to you?’ is asked to the parents, it was
observed that the women gave answers like ‘being a
woman’ and ‘being powerful means me’.
Conclusion
According to research result, it is determined that the par-
ents have problems due to physical, social, cognitive, emo-
tional and moral illness process; gender perspective and
roles; domestic functionality; social environment; social
perception; and issues related to services.
In the caregiving process, especially women take the
full burden. The dominant gender perspective causes most
fathers not to accept the disease. In particular, the associa-
tion of mental illnesses with weakness causes the father to
refuse to accept the disease of his sons.
Parents should be aware of their strengths, abilities
and community resources to overcome the difficulties
they face, and increase the knowledge and skills and
awareness of parents about the disease and disease pro-
cess. In addition, parents need to share the overall
responsibility for the disease process on the basis of
gender equality, establishment of a relationship between
parents and health professionals on the basis of cooper-
ation, and parents being at the center of the decision-
making process. In this context, social workers should
work in collaboration with each family and implement
practices.
Conflict of interest
The author(s) declared no potential conflicts of interest with
respect to the research, authorship and/or publication of this
article.
Funding
The author(s) received no financial support for the research,
authorship and/or publication of this article.
Akgül Gök and Duyan
ORCID iD
Fulya Akgül Gök https://orcid.org/0000-0003-3657-8704
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