Issues in Mental Health Nursing

ISSN: 0161-2840 (Print) 1096-4673 (Online) Journal homepage: http://www.tandfonline.com/loi/imhn20

Support Needs for Family Caregivers of Clients

with Mental Illness in Iran: A Qualitative Study

Mohammad Akbari , Mousa Alavi, Alireza Irajpour, Jahangir Maghsoudi,

Violeta Lopez & Michelle Cleary

To cite this article: Mohammad Akbari , Mousa Alavi, Alireza Irajpour, Jahangir Maghsoudi,
Violeta Lopez & Michelle Cleary (2018): Support Needs for Family Caregivers of Clients
with Mental Illness in Iran: A Qualitative Study, Issues in Mental Health Nursing, DOI:
10.1080/01612840.2018.1445324

To link to this article: https://doi.org/10.1080/01612840.2018.1445324

Published online: 12 Apr 2018.

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ISSUES IN MENTAL HEALTH NURSING
https://doi.org/./..

Support Needs for Family Caregivers of Clients with Mental Illness in Iran: A
Qualitative Study
Mohammad Akbari, BSc, MSc, PhD Candidate (Nursing)a , Mousa Alavi, BSc, MSc, PhDb , Alireza Irajpour, BSc, MSc, PhDc ,
Jahangir Maghsoudi, BSc, MSc, PhDd , Violeta Lopez, RN, PhD, FACN e , and Michelle Cleary, RN, PhD f
a
Student Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran; b Nursing and Midwifery Care
Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran; c Nursing & Midwifery Care Research Center,
Critical Care Nursing Department, Faculty of Nursing & Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran; d Nursing & Midwifery Care
Research Center, Mental Health Nursing Department, Faculty of Nursing & Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran; e Alice Lee
Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore City, Singapore; f School of Health Sciences,
College of Health and Medicine, University of Tasmania, Sydney, NSW, Australia

ABSTRACT
This paper explored the support needs of family caregivers of people living with a mental illness in Iran.
This descriptive study focused on the experiences of 20 family caregivers as well as the views of 29 profes-
sional support workers through individual face-to-face interviews. From these interviews three key themes
emerged in regards to the care needs of family caregivers: (i) social support; (ii) emotional support; and
(iii) safety and security. These themes highlighted the complex role of caring for a family member with a
mental illness and the emotional, social and economic challenges that these caregivers experienced as a
result. Iranian caregivers garnered support not only from other family members but also from neighbors
and religious leaders but lacked the much needed respite care found in western countries. This research
study highlighted the importance of ensuring that the caregivers themselves receive appropriate and ade-
quate support to fulfill their caregiving role.

Introduction
The Islamic Republic of Iran has a relatively high (and increas-
ing) prevalence of mental health disorders (Noorbala, Bagheri
Yazdi, & Hafezi, 2012; Sarokhani, Teimori, Sayehmiri, &
Moghimbeigi, 2016; Sharifi et al., 2015). Research suggests that
approximately one in four Iranians experience a psychiatric
disorder(s) in a 12-month period and one in seven have a psy-
chiatric disorder associated with moderate to severe disability
(Sharifi et al., 2015). Similarly, other research on mental health
disorders demonstrates a relationship between prevalence
and increased age, a decrease with higher levels of education,
and higher associations among the unemployed, housewives
and divorcees (Noorbala et al., 2017).
Mental health services are often under-resourced and care
is commonly passive, resulting in many clients having frequent
relapses with readmission to hospital (Pad, Alavi, & Hajebi,
2017). In line with evolving treatment modalities in other coun-
tries (Cleary, Freeman, Hunt, & Walter, 2006), community care
is becoming the preferred treatment setting, which has led
to clients’ family and friends often assuming a primary care-
giving role (Shamsaei, Cheraghi, & Bashirian, 2015). Increas-
ingly in Iran, families of consumers are being actively included,
and mental health facilities are working closely with caregivers
and professional support groups. Although data is limited to
2006, the Iranian Government also provides some economic
assistance to support the families and to aid advocacy groups
in their involvement in the development and implementation of
mental health policies and plans (World Health Organization,
2006).
Iran has a multi-layered system of mental health service pro-
vision. Hospitals are affiliated with the Universities of Medical
Sciences, under the Ministry of Health and Medical Educa-
tion (Forouzan et al., 2014), and these organizations are key
providers of mental health services to the general public. The
Ministry of Cooperatives, Labor, and Social Welfare of Iran is
another primary provider of social care and mental health sup-
port services, with 1200 offices and counseling centers across
Iran (Damari, Alikhani, Riazi-Isfahani, & Hajebi, 2017). In
addition, there are also many war veterans with mental health
disorders who are medically covered by the Foundation of
Martyrs and Veterans Affairs. Other organizations that facilitate
the delivery of mental health services include, but are not lim-
ited to, police, justice, municipalities, government, emergency
services, and non-government organizations (NGOs) (Damari,
Alikhani, Riazi-Isfahani, & Hajebi, 2017). This diverse group
is collectively referred to as ‘professional support workers’
within this study. However, it is the large number of people with
mental health disorders cared for in the family home by family
members, neighbors, friends or work colleagues who make up
the substantive part of Iranian mental health service provision.

CONTACT Mousa Alavi m_alavi@nm.mui.ac.ir; mousa_alavi@yahoo.com Nursing and Midwifery Care Research Center, Faculty of Nursing and Midwifery, Isfahan
University of Medical Sciences, Isfahan, Iran.
©  Taylor & Francis Group, LLC
2 M. AKBARI ET AL.
People living with mental health issues often experience
difficulties with aspects of daily living, and family members and
partners often assume responsibility to help care for that person
and assist them with activities (Berk, Jorm, Kelly, Dodd, & Berk,
2011; Papastavrou, Charalambous, Tsangari, & Karayiannis,
2010; Weimand, Hall-Lord, Sällström, & Hedelin, 2013). Family
members often take on these responsibilities for a range of rea-
sons including, but not limited to, “love, compassion or a sense
of duty” (Weimand, Hall-Lord, Sällström, & Hedelin, 2013, p.
99). In Iran, family is considered to be a “heavenly” unit with a
strong cultural and religious foundation of “loving, belonging,
training” and providing “safety, security and unity” (Parvizy &
Ahmadi, 2009, p.163). For this reason, family members (namely
parents, spouses, siblings, and children) often become the main
caregivers to the family member with mental illness where that
person is unable to care for himself or herself or govern the
activities of daily living.
The impacts and consequences of providing care to a close
relative or friend with a mental illness can be many and varied
(Ae-Ngibise, Doku, Asante, & Owusu-Agyei, 2015; Mulud &
McCarthy, 2017). Caregivers can experience anxiety and depres-
sion (Pirkis et al., 2010) due to disabling symptoms or functional
impairment of the family member, or as a result of consequences
such as social isolation, limited occupational participation and
financial pressures arising from the illness (Amir, 2015; Berk,
Jorm, Kelly, Dodd, & Berk, 2011). In addition, caregivers
can experience disruption to routine, social discrimination
(Papastavrou, Charalambous, Tsangari, & Karayiannis, 2010),
decreased time for leisure and socializing, distress and decreased
personal physical health and emotional wellbeing (Möller-
Leimkühler & Wiesheu, 2012; von Kardorff, Soltaninejad,
Kamali, & Eslami Shahrbabaki, 2016). Comorbidities, including
drug abuse, which is a significant problem in Iran (Amin-
Esmaeili et al., 2016), can place an additional burden on families
(Cleary, Hunt, Matheson, & Walter, 2008), with Iran having
a high rate of drug and alcohol abuse disorders that accounts
for some 2% of the burden of disease (Moazen et al., 2015).
This substance abuse, coupled with the challenges of mental
illness, can have negative consequences for the individual and
family life (Aghakhani, Lopez, & Cleary, 2017; Fereidouni et al.,
2015).
There is limited research in Iran on caregivers’ experi-
ences. One Iranian study that explored caregivers’ attitudes
toward caring for elderly clients with psychiatric disorders
found that the majority of caregivers expressed negative atti-
tudes towards this role (Bastani, Ramezani, Lolati, & Haghani,
2017). Participants were concerned about the long-term nature
of care for elderly kin with psychiatric disorders, with care-
giver fatigue a noted outcome of long-term care, and the greater
the number of people with a psychiatric disorder in the fam-
ily, the more negative the response was found to be (Bastani,
Ramezani, Lolati, & Haghani., 2017). Similarly, in a qualitative
study involving 16 long-term caregivers, family were found to
experience frustration and strain when caring for their men-
tally ill family member and had limited access to appropriate
information and supports (Shamsaei, Cheraghi, & Esmaeilli,
2015).
Whilst there may be subtle differences between caregiver
experiences, common to all is the experience of a challenging
life situation (Weimand, Hall-Lord, Sällström, & Hedelin, 2013).
It can be difficult for family members dealing with behavioral
changes in a loved one as a result of their disorder/ill-health.
They often also have to confront and manage changes in their
own lives (Weimand, Hall-Lord, Sällström, & Hedelin, 2013).
Despite close family and friends being the main source of sup-
port, there is an identified lack of information for caregivers as
to how best to provide support and self-care to the family mem-
ber (Berk, Jorm, Kelly, Dodd, & Berk, 2011; Cleary, Freeman,
Hunt, & Walter, 2005; Sabanciogullari & Tel, 2015). It is therefore
important that caregivers are able to access relevant information
to support them in coping constructively with the family mem-
ber, as well as their own, physical, emotional and social needs.
This can include a variety of delivery modes, from brief train-
ing sessions on how to support people with a mental illness or
consultations by mental health professionals with family mem-
bers to determine needs and how best to meet them (Berk, Jorm,
Kelly, Dodd, & Berk, 2011). It is against this identified paucity of
research that the present study was developed to explore the sup-
port needs of Iranian families caring for a relative with mental
illness.
Method
Research approval was granted by the Medical Ethics Com-
mittee of the Isfahan University of Medical Sciences (1395-3-
250), Iran. Interviews were conducted between August 2016 and
February 2017. A qualitative approach was used to collect data,
which is valuable when the topic is new or underdeveloped (Hol-
loway & Galvin, 2016) as is the case for family support in Iran.
Qualitative research is considered an alternative to quantita-
tive research if the purpose is to gain an in-depth understand-
ing of participants’ experiences or perceptions of a certain phe-
nomenon (Sandelowski, 2008). Findings of qualitative studies
can be used to provide guidance for health practitioners, policy
makers and other stakeholders in both hospital and community
settings, as well as to facilitate a change of practice and improve
health outcomes from understanding the needs of health care
users (Sandelowski, 2004). Interviews have become increasingly
common as a source of data in health research as they offer the
opportunity to extract richer data in greater context that a sim-
ple structured survey (Jansen, 2010).
Sample and setting
Twenty caregivers were recruited from three hospitals in Isfahan
city, the only providers of specialized psychiatric services to res-
idents and neighboring provinces. The inclusion criteria were
family members caring for a relative with a diagnosed mental
illness for a minimum of one year in the family home. Caregivers
of clients who were either hospitalized or discharged during the
study period were approached to participate in the study. A total
of 29 professional support workers (e.g. police, Justice, Munci-
pality, and Governor Department staff, Ministry of cooperative,
Iranian Institute of Psychiatry and Ministry of Health and
Medical) were also recruited from support organizations across
Iran. All relevant organizations/ informants were identified by
the research committee and then an invitation was extended
to them to participate in the study. The lead author facilitated
 ISSUES IN MENTAL HEALTH NURSING 3

recruitment by making contact with the managers of the rele- Table . Profile of family caregivers.
vant organizations. On some occasions, managers of the relevant Variables Frequency
organizations introduced the researcher to potential informants.
Purposeful sampling by means of maximum variation was Gender Male 
Female 
used to recruit both caregivers and professional support workers Age (years) – 
to ensure diversity in relation to supportive roles and positions, – 
demographics, and work experience. For family caregiver par- – 
– 
ticipants, management provided their contact details for those > 
meeting the study inclusion criteria. Participants were then con- Education No education 
tacted and invited to participate in the study. All participants Primary 
Secondary 
met with the researcher who provided them with comprehen- Tertiary 
sive information on the aims and process of the study and gained Caregiver Father 
informed written consent. Mother 
Sister 
Brother 
Spouse 
Data collection Mental health problem of Anxiety disorder 
family member
Face-to-face interviews took place at a mutually convenient Depressive disorder 
time and venue. Family caregivers were interviewed in a ded- Schizophrenia 
icated private room in the hospital at a mutually agreed time. Bipolar mood disorder 
Autism Spectrum 
Caregivers were asked about their support needs and what they Disorder (ASD)
considered important. They were also asked about their expe- Dementia 
rience with obtaining support from relevant service providers Deficit Hyperactivity 
Disorder(ADHD)
and what had facilitated or hindered gaining the support that Number of caregiving – 
they required. Participants were also encouraged to discuss any years
other issues they determined important in relation to support – 
– 
needs. > 
Professional support workers were interviewed at their work
place at a mutually agreed time. Support workers were asked
about the support services they provide to families, and experi- members of the team then reviewed themes and coding, until
ences of providing support, including collaborations with other consensus was achieved. Managing and analyzing data was
support providers (i.e. organizations, supportive groups or indi- done using MAXQDA 10 software (German company VERBI
viduals). They were also asked to provide their views on what GmbH). To ensure rigor and trustworthiness of the research
they perceived were the support needs of caregivers, thereby Lincoln and Guba’s (1985) framework was used throughout the
offering a viewpoint external to the caregiver themselves. study to establish credibility of the findings; transferability to
Probing questions were used during the interviews where other practice areas; dependability; and to minimize bias and
further explanations or clarifications were needed. All inter- confirm findings.
views were conducted face-to-face by the first author, ranging
between 30 to 90 minutes, and were audio-recorded. At the end
of each interview, participants were given a small gift worth Findings
US$15 as a gesture of thanks. Data collection continued until
saturation of data was achieved, which can be defined as a point Profile of participants
where no new information emerges and understandings are
Twenty interviews were conducted (8 males and 12 females)
comprehensive (Cleary, Horsfall, & Hayter, 2014; Holloway &
with family caregivers who have been providing care to a family
Galvin, 2016; Malterud, Siersma, & Guassora, 2016).
member with various mental health problems from one to more
than 30 years (see Table 1). Twenty-nine (12 male and 17 female)
Data analysis professional health and community workers, who had been pro-
viding support to family caregivers for 16 to 20 years, were also
Interviews were transcribed verbatim and checked to ensure
interviewed (see Table 2).
accuracy of the transcription. Content analysis was guided by
Graneheim and Lundman (2004) and sought to describe the
support needs of family caregivers in Iran. Transcripts were
Themes
read and re-read (by author 1 and 2) to achieve a fuller sense
of participants’ meaning and experience. Themes were then The themes that emerged from the data depicted the key sup-
extracted and assigned codes to reflect the experiences of the port needs of family caregivers as being: (i) social support;
participants. Finally, similar codes were grouped into more (ii) emotional support; and (iii) safety and security. Quotes of
comprehensive categories/ subcategories through a process of caregivers are identified by with a ‘c’ and professional support
comparison, reflection, and interpretation, providing higher- workers are represented by ‘e’ to differentiate the two sources of
level themes and sub-themes for discussion and analysis. All data.
4 M. AKBARI ET AL.

Table . Profile of support workers (n = ).
Variables Frequency
Gender Male
Female
Duration of providing –
support(years) –
–
–
>
Profession Psychiatric nurse
Psychologist
Psychiatrist
Clergyman
Sociologist
Social scientist
Police department expert
Justice expert
Expert of the Ministry of
cooperative
Municipality expert
Governor expert
Iranian Institute of
Psychiatry expert
Ministry of Health and
Medical expert
Social support
Caregivers believed that they should have equal rights to the
enjoyment of material and spiritual resources and social sup-
ports, irrespective of their nationality, gender, race, religion, or
physical or mental health. This included equal opportunities and
supports for their family member with a mental health disorder,
as a sociologist noted: “An issue that I think is very important
today is the issue of inequality and social exclusion as these depri-
vations affect the mental health of caregivers. One example is that
if the neighbors understand you have such a patient in your home,
they may shun or isolate you” (e8). Participants believed that it
was important that people were not indifferent to the problems
of others, and that the Iranian community must be supportive
of families of a person with a mental illness and trust that family
caregivers are doing their best.
Most caregivers emphasized the need for more supportive
organizations that could assist them in their role as well as pro-
vide practical support. As one caregiver father of a child suffer-
ing from a bipolar disorder stated, “I think that more attention
should be paid to caregivers. We have to be covered because we
really feel like we have no rights in society. The government should
support us and consider our care as a job” (c1). Whilst person-
centered care was recognized as important in the Iranian com-
munity the omission of caregiver needs was acknowledged and
expressed by one psychiatric nurse: “In my opinion, our society
is more patient-oriented than family-oriented, and in fact family
members have not been given much attention” (e26).
Local support from neighbors was considered an important
aspect of social support, especially financial and material aid,
as one father stated, “My neighbors know this and they donate
money and are sympathetic people, saying that they will always
support us” (c15). Others described supportive communities
where community members provided understanding: “I am
glad because our greengrocer is supportive, because sometimes I
send my daughter to shop and it takes her a long time to choose,
because she is obsessed, but he is so helpful with her” (c15).
Support from the community was a need that was also voiced
by many of the professional support workers in the study. Par-
ticipants believed that social support was important to ensure
 caregivers did not feel alone in caring for the person with a

 mental illness. One consultant in the police department stated,
 “ … We must consider these caregivers as an important part of the
 community as they an important job. We have to accept that they

 have rights and respect them …” (e16).
 Support workers expressed a belief that Iranian society
 needed to strengthen its support for family caregivers. In Iran,

 all members of the community, including family, friends, col-
 leagues, acquaintances and authorities, form the network of sup-
 port for caregivers and support needed to come from all of these

 quarters. A sociologist reported that, “A social worker can talk
 to a neighborhood business person, and teach [them] how to deal
with these families” (e8). One psychiatric nurse said, “If there are

 several neighbors in the apartment, they could plan to share the
 duties of the caregiver. They could share which neighbor should do
the shopping for the caregiver or even visit and help with house-

hold chores” (e23).
The importance of respite (and practical examples of social
support that could be offered to caregivers) was highlighted by a
psychiatric nurse: “A person who cares for a patient has less leisure
time because he devotes himself to care for a patient. … We need
to design a plan where the caregiver also [gets] rest. We must have
respite available for the patient, allowing the family caregiver to
have a few days to go, rest, and have fun” (e26).
Emotional support
Caregivers expressed concern about the stigma of mental illness
within their community and the resulting absence of support
and shunning for some caregivers which reinforced mental ill-
ness stereotypes. A caregiver mother of a client stated, “Others
told us ‘if we had a kid like this we would have died’. I used to go
to their houses but they would not open [the door] although they
were home. They believed that my kid might affect their family,
and I was despised a lot” (c19).
However, caregivers also reported that the feeling of being
loved and cared for by others was an important emotional
need that was often met. As one caregiver spouse stated, “My
neighbors invite me over, and they respect me, I feel good” (c12).
Caregivers appreciated simple expressions of understanding
and support, as a caregiver mother of a depressed client high-
lighted: “My neighbor, when he understood that my kid had that
problem, asked how could he help me, and I said your asking is
enough for me” (c13).
Many caregivers believed the impactful nature of the caring
role meant it was essential that they were heard and understood,
as expressed by a daughter of a consumer: “My friend listens
to me, and I talk to them about my patient and my problems”
(c17). A psychologist added, “I listen to them, give advice, talk,
they cry, and get better. I give free advice here, sometimes I go to
visit them, and listen to them for one or two hours” (e19). It was
also considered important that caregivers were not judged and
had opportunities to access family support groups, which could
offer such services as psycho-educational classes through the
hospital system for family caregivers of the psychiatric clients.
Caregivers believed that attending support groups would give

them opportunities to talk about their own experiences and
ask questions without being judged, as a spouse of a client
described: “We are really glad that we are in the family classes,
we are allowed to talk about it and not feel judged” (c5).
Hope for the future and trust in God were among the things
that were considered to add to the emotional support of care-
givers. As one caregiver father explained, “Our cleric said, ‘Think
of your abilities, think of God, and ask help from God and he will
certainly help you. God knows everything. Do not think God has
forgotten you. God’s power is beyond this. Nothing in this world is
on its own. You do your duty; you will see the result of your deed’,
and we feel peace with these words” (c1).
Several participants also focused on the need to find emo-
tional support from within and create a sense of self-reliance. A
sociologist from the Ministry of Health said, “We must let these
caregivers rely on themselves” (e9). Caregivers were also keen to
increase their ability for self-reliance and, through this, increase
their capacity to care, but had varying experiences in receiving
encouragement and support from others to achieve this. As one
caregiver mother illustrated, “My friends are very helpful in sup-
porting me” (c13). Conversely, another caregiver (sister) stated,
“I expect my brother and my sister to support me, or at least to
support my decisions and encourage me” (c17).
Safety and security
Caregivers reported concerns that they were sometimes left
physically vulnerable or at risk by behavioral changes of the per-
son with a mental illness. This might include instances when the
person would break and throw objects, or become aggressive,
and caregivers often felt at a loss as to how to provide care but
maintain personal safety. Therefore, they reported the need to
feel safe and secure as a caregiver. A sister caregiver described,
“I really do not know what to do. I feel a lot of stress, especially at
bedtime. I am afraid he might do something to harm us, so I collect
all the dangerous items in the room, I also gather the fruit knife for
food. I do not sleep well. I worry about it …” (c14). Professional
support workers also noted the need to protect the safety of care-
givers. A consultant in the police force explained: “We help these
families in these critical cases and then we contact social services
and provide follow up to the problem” (e16). The law was deemed
crucial in ensuring the safety of family members, as a psycholo-
gist explained: “We are considering a series of legal rights for care-
givers where the law provides them with a number of facilities”
(e19). In some cases, caregivers in this study expressed comfort
in the fact that the judicial system offered protection to them
as a caregiver, as one participant said: “My patient has already
complained to the court more than 10 times before [about me],
but I have been exonerated” (c2). There was no crime here. The
patient was paranoid and he thought that the family members
were the enemy. When the judge realized this, then the caregiver
was acquitted.
Discussion
The findings show that the role of caregivers is crucial in sup-
porting family members with a mental illness and support for
caregivers is essential for their own physical and emotional well-
being. Consistent with other research in Iran, family caregivers
ISSUES IN MENTAL HEALTH NURSING 5
often shoulder the main responsibility for the patient’s men-
tal health (Bastani, Ramezani, Lolati, & Haghani, 2017). The
demands of the caregiver role are noted in the literature, and
can impact carer relationships with friends and family as well as
their broader social and support networks (Cleary, Freeman, &
Walter, 2006; Shamsaei, Cheraghi, & Bashirian, 2015).
One major issue identified by participants was the social
ostracisation that caregivers can experience as a consequence of
community attitudes towards mental illness. Such ostracisation
was viewed as a lack of support by the wider community, or by
other family members. This is not uncommon across cultures
and is linked to the stigma associated with mental illness, which
represents a major challenge for the integration of patients (and
caregiver support) within the community (Horsfall, Cleary, &
Hunt, 2010; Koschorke et al., 2017; Papastavrou, Charalambous,
Tsangari, & Karayiannis, 2010). These concerns are supported
across cultures. In Iran, for example, people with mental
disorders and family caregivers have reportedly experienced
stigma, prejudice and discrimination within their communities
(Taghva et al., 2017) and in Norway isolation and loneliness
(Weimand, Hall-Lord, Sällström, & Hedelin, 2013). Caregivers
who experience discrimination are at risk of neglecting their
own wellbeing and are at greater risk of caregiver burnout
and depression. Therefore, it is essential that they know how
to access support networks to counteract this sense of social
isolation (Berk, Jorm, Kelly, Dodd, & Berk, 2011; Koschorke
et al., 2017) as well as being able to access respite, as was also
highlighted in the present study findings. However, compared
to other countries where respite care is accessible to caregivers
(Dyches, Christensen, Harper, Mandleco, & Roper, 2016; Jardim
& Pakenham, 2010; Jeon, Brodaty, & Chesterson, 2005), there
is no such services in Iran. Therefore, this is something that
the Iranian government needs to further consider (Shamsaei,
Cheraghi, & Bashirian, 2015).
The religious clergy in Iran have an important role in reshap-
ing attitudes in the community to decrease stigma (Aghakhani,
Lopez, & Cleary, 2017; Taghva et al., 2017) and strengthen
community support. These religious affiliations were reported
as a strong support component in the lives of many Iranian
caregivers. This is reiterated in a recent review relating to
stigma and mental illness in the Middle East (Sewilam et al.,
2015). Recommendations to reduce stigma included: engaging
religious leaders; educating families so they can support their
relatives, overcome shame and seek treatment; and, educat-
ing young people to increase awareness and combat negative
stereotypes (Sewilam et al., 2015). The literature notes the
powerful effect religion and religious leaders (Pearce, Medoff,
Lawrence, & Dixon, 2016) can have on shaping community
views particularly in Iran (Irajpour, Ghaljaei, & Alavi, 2015)
and thereby promoting the support needs of caregivers.
Information that is relevant and helpful is the obvious need of
Iranian caregivers. Similarly, international research has shown
that caregivers often feel that they are not given adequate and
individually tailored information about effective ways to sup-
port themselves and their family member (Berk, Jorm, Kelly,
Dodd, & Berk, 2011; Cleary, Freeman, Hunt, & Walter, 2005).
Routine information is often inadequate from caregivers’ per-
spective, with consistent requests for more information on the
illness and its treatment, as well as the practicalities of living
6 M. AKBARI ET AL.
with mental illness. Information sought relates not only to diag-
nosis and recommended treatment, but also practical ways to
deal with everyday concerns that impact on living (Berk, Jorm,
Kelly, Dodd, & Berk, 2011; Cleary, Freeman, Hunt, & Walter,
2005). Caregivers are not always well equipped to manage and
cope with their roles and responsibilities (Papastavrou, Char-
alambous, Tsangari, & Karayiannis, 2010) as demonstrated in
the current study.
Some of the findings from this research have highlighted
the limited support and resources for families. However, the
findings of this study are unique, as participants did not focus
strongly on information needs or a lack of communication
by mental health service providers. The majority of the dis-
cussion by participants focused on interpersonal relationships
and the power of emotional and practical support. For exam-
ple, the patience demonstrated by a greengrocer or the sim-
ple act of being asked if there was anything a neighbor could
do to help. The emotional levels of support, be they from the
community, neighbors or family and friends, were seen as the
primary need by caregivers, and discussion of more material
support considerations was minimal. The community response
to caregivers supporting a family member with mental ill-
ness appeared from the findings to be one of offering societal
recognition for their role as carer and legal protections for
them.
In the current study, the financial consequences of care-
giving were also noted to be high, with participants valuing
donations or material support by neighbors and the commu-
nity. Caregivers often provide care during their peak years of
productivity, impacting both their capacity for employment and
household income (Pirkis et al., 2010). In Iran there is only a
small government-provided caregiver allowance/payment and
this has strong financial implications for caregivers and their
care receivers. Social support programs that provide financial
aid and formal recognition of the role of caregivers are therefore
one option that could address the need of caregivers (Daniel,
2012; Pirkis et al., 2010).
Another aspect that caregivers in this study expressed as a
concern was the volatility and aggression that may occur as a
result of the mental illness experienced by their family mem-
ber. Some studies have described caregivers’ feelings of being
challenged by unpredictable and violent behaviors from their
mentally ill relative (Karyn, 2016; Weimand, Hall-Lord, Säll-
ström, & Hedelin, 2013). In Iran, some caregivers may also have
more than one person at home with a mental health disorder
(Bastani, Ramezani, Lolati, & Haghani, 2017; Weimand, Hall-
Lord, Sällström, & Hedelin, 2013). With one family member
with a mental illness, relatives may be at increased risk, but
this risk increases when more than one person needs contin-
ued supervision or direct care (Zauszniewski, Bekhet, & Suresky,
2010).
In the present study, caregivers provided support and coped
in different ways and their needs varied accordingly, as did
the needs of their care receiver. It is well recognized that sup-
port is essential to caregivers and all family members (Iseselo,
Kajula, & Yahya-Malima, 2016; Pirkis et al., 2010). Various
support options are recommended in Iran, such as coun-
selling programs (Bastani, Ramezani, Lolati, & Haghani, 2017),
and family education (Rezaie, Shafaroodi, & Philips, 2017).
However, it is first important to understand not just what
is recommended as beneficial to caregivers, but what care-
givers themselves perceive as being their primary needs. The
findings of this study highlight that these needs may relate
more to emotional support and societal valuing of their care-
giver role. These findings also underscored the crucial role
caregivers play in the well-being, and likelihood of recov-
ery, for their close relative (Pirkis et al., 2010). This high-
lights the need for the development of more sensitive and inte-
grated services in Iran for people living with mental health
problems. Findings highlight the need to improve respectful
communication, information and support and coordination of
care between, healthcare staff, clients and caregivers, consis-
tent with previous research in Iran (Alavi, Irajpour, Abdoli,
& Saberizafarghandi, 2012; Shamsaei, Cheraghi, & Bashirian,
2015).
Limitations
The study is limited to only the perspectives of family caregivers
(not close friends) and professional support workers and did
not include the clients’ accounts. The study strengths included a
diverse and large sample of caregivers and support workers (to
ensure variation), which provided comprehensive accounts of
the perceived support needs of caregivers.
Conclusion
The government’s model to de-institutionalize mental health
patients and leave the care to family members is something new
in Iran, a role which family caregivers are not well prepared for.
It is known that family caregivers are a significant support and
resource in the care and treatment of Iranians affected by men-
tal illness. However, caring for a family member with a mental
illness can present emotional, social and economic challenges to
the family. Iranian family caregivers in this study were found to
be in need of social recognition, material aid, emotional sup-
port and protections around their own wellbeing and health.
The findings highlight that support services, government and
communities in general should respond to the needs of care-
givers if mental health clients will continue to be cared for at
home by their family caregivers.
Conflict of interest statement
The authors declare that there is no conflict of interest.
Acknowledgement
This study is derived from a Ph.D. thesis of Nursing sponsored by the Isfa-
han University of Medical Sciences. The authors are thankful to the Vice-
chancellor and participants. We also thank Sancia West for her review of an
earlier draft of this article.
Funding
This work was supported by the Nursing and Midwifery Care Research
Center, Faculty of Nursing and Midwifery, Isfahan University of Medical
Sciences, Iran.

Author contributions
All authors have agreed on the final version and meet at least one of
the following criteria recommended by the ICMJE (http://www.icmje.
org/recommendations/)]
rSubstantial contributions to conception and design, acquisition of data
or analysis and interpretation of data; drafting the article or revising it crit-
ically for important intellectual content.
ORCID
Violeta Lopez http://orcid.org/0000-0001-8844-0331
Michelle Cleary http://orcid.org/0000-0002-1453-4850
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