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Background Family caregivers of patients with mental disorders play the most important role in the care of psychiatric patients (PPs) and preventing their readmission. These caregivers face different challenges in different cultures. We conducted this study to determine the challenges of caregivers of patients with mental disorders in Iran. Materials and Methods This study is a narrative review with a matrix approach conducted by searching electronic databases, SID, IRANMEDEX, MAGIRAN, PUBMED, SCOPUS, Web of Sciences, from February 2000 to 2017. Searched keywords include challenges, family caregivers of psychiatric patient, family caregivers and psychiatric patient, mental illness, families of psychiatric patient, and Iran. One thousand two hundred articles were found in English and Farsi, and considering inclusion and exclusion criteria, 39 articles were examined. Results The results of the studies show that not meeting the needs of caregivers, burnout and high burden of care, high social stigma, low social support for caregivers, and low quality of life of caregivers were among the most important challenges faced by caregivers. Conclusions Despite the efforts of authorities in Iran, family caregivers of patients with mental disorders still face challenges. Therefore, the need for all-inclusive support for family caregivers of patients with mental health problems is necessary.
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© 2018 Iranian Journal of Nursing and Midwifery Research | Published by Wolters Kluwer - Medknow 329
Introduction
Among medical diseases, psychiatric
disorders have a high prevalence and are a
signicant burden. According to the most
recentmeta‑analysis,theaverageprevalence
ofmentaldisordersintheworldis13.4%,[1]
and 30–50% of psychiatric patients (PPs)
experiencerelapse ofsymptoms inthe rst
6 months and 50–70% in the rst 5 years
afterdischargefromthehospital.[2‑4]Due to
deinstitutionalization of the treatment and
careofPPs,theroleoffamilycaregiversof
these patients is important in reducing the
number of hospital admissions.[5] Family
caregivers of PPs while being able to
manage and control the patient and their
diseaseplay a vitalroleinmaintenanceand
rehabilitation of patients.[6] Thus, family
caregivers of PPs suffer great pressure
physically, mentally, and socially in the
course of care and control of the sick
membersof the family.[7,8]
In fact, patients and their families are
constantlyaffectedby the changes resulting
from the disease and its treatment. These
changes gradually reduce the levels of
Address for correspondence:
Dr. Mousa Alavi,
Nursing and Midwifery Care
Research Center, Faculty of
Nursing and Midwifery, Isfahan
University of Medical Sciences,
Isfahan, Iran.
E‑mail: m_alavi@nm.mui.ac.ir
Access this article online
Website: www.ijnmrjournal.net
DOI: 10.4103/ijnmr.IJNMR_122_17
Quick Response Code:
Abstract
Background: Familycaregiversofpatientswithmentaldisordersplaythemostimportantroleinthe
care of psychiatric patients (PPs) and preventing their readmission. These caregivers face different
challengesindifferentcultures.Weconductedthisstudytodeterminethechallengesofcaregiversof
patientswithmentaldisordersinIran.Materials and Methods:Thisstudyisanarrativereviewwith
a matrix approach conducted by searching electronic databases, SID, IRANMEDEX, MAGIRAN,
PUBMED, SCOPUS, Web of Sciences, from February 2000 to 2017. Searched keywords include
challenges,family caregiversofpsychiatricpatient,family caregivers andpsychiatricpatient,mental
illness, families of psychiatric patient, and Iran. One thousand two hundred articles were found
in English and Farsi, and considering inclusion and exclusion criteria, 39 articles were examined.
Results:Theresultsofthestudiesshow that not meeting the needs of caregivers,burnoutandhigh
burden of care, high social stigma, low social support for caregivers, and low quality of life of
caregiverswere amongthemostimportant challengesfacedbycaregivers. Conclusions:Despitethe
effortsofauthoritiesinIran, familycaregiversofpatientswithmentaldisorders stillfacechallenges.
Therefore, the need for all‑inclusive support for family caregivers of patients with mental health
problemsis necessary.
Keywords: Caregivers, Iran, literature review, mental disorders
Challenges of Family Caregivers of Patients with Mental Disorders in Iran:
A Narrative Review
Review Article
Mohammad Akbari1,
Mousa Alavi2,
Alireza Irajpour2,
Jahangir
Maghsoudi2
1Student Research Center,
Faculty of Nursing and
Midwifery, Isfahan University of
Medical Sciences, Isfahan, Iran,
2Nursing and Midwifery Care
Research Center, Faculty of
Nursing and Midwifery, Isfahan
University of Medical Sciences,
Isfahan, Iran
How to cite this article: Akbari M, Alavi M,
Irajpour A, Maghsoudi J. Challenges of family
caregivers of patients with mental disorders in Iran:
A narrative review. Iranian J Nursing Midwifery Res
2018;23:329-37.
Received: July, 2017. Accepted: February, 2018.
performance and the ability of family
members, destruction of emotional system
and communication structures of family,
ineffective relationships among members,
emergence of nancial and economic
problems, reduced social interactions of
the family, changes in roles, reduced life
expectancy, and emergence of symptoms
such as anger, feeling guilty, grief, and
evendenial.[9,10]
Overall, mental burden of care for a
PP while reducing the quality of life of
caregivers can jeopardize their physical
and mental health, and ultimately lead to
poor care, leaving the treatment, or violent
behavior with patients and these problems
can exacerbate disorder in patients.[5,11]
Thus,ifcaregiversareleftwithoutadequate
social support, they can also be considered
ashiddenpatients.[12]
Studies show that the status of caregivers
of patients with mental disorders has
been neglected in in some countries.
Althoughsomeoftheneedsandchallenges
for caregivers and family members of
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Akbari, et al.: Challenges of family caregivers of patients with mental disorders
330 Iranian Journal of Nursing and Midwifery Research ¦ Volume 23 ¦ Issue 5 ¦ September-October 2018
patients may be common with the patients, they have
unique needs with many uncertainties.[13] On the other
hand, many doctors and health care workers, particularly
psychiatric nurses, often focus their care more on the
patient and ignore the family and main caregivers of the
patient. These doctors and nurses exclude them from the
disease, treatment, and decision‑making processes and do
not consider their needs; hence, families do not have a
chance to express their concerns and needs and are at a
risk of serious problems.[14] By identifying the problems
andchallenges of the caregivers ofthe patient’sadmission
tohospital,psychiatric nurses canplanfor their issuesand
problems.
Althoughnumerousstudies have been conducted onfamily
caregiversofmentallyillpatients in Iran, acomprehensive
overview and scientic study has not been conducted
to determine their challenges. Therefore, in this study,
scientic evidences and other relevant documents were
reviewedto capture thechallengesofcaregiversofpatients
withmentalhealthproblemsintheIraniancontext.
Materials and Methods
This is a narrative review study using a matrix approach
in 2017. A review study includes a summary of previous
ndingsin the literaturereview of research on aparticular
topic.[15]Theexistenceofawealthofinformationisbothan
opportunityandachallenge.Asystematicmethodofreview
is needed for these texts to be used with full performance
toovercome this challenge. Therefore,we usedthe matrix
method[15]to achievethestudyobjectives.
Initially, a team consisting of nursing faculty members of
IsfahanUniversityofMedicalSciences,Iranandalibrarian
were arranged. Literature search was carried out by the
principal author (M.A). The extracted documents were
reviewed by other researchers independently to include
relevantand appropriatedocumentsinthestudy.
The search took place in electronic databases SID,
IRANMEDEX, MAGIRAN, Google scholar, PUBMED
SCOPUS, Web of Sciences, in English and Persian, from
2000 to 2017 with the following keywords – family
caregivers of PPs, family caregivers and PPs, family of
PPs, and Iran. A librarian helped in literature search.
Finally, 1200 published documents (i.e., 1100 papers, 45
theses, and 55 books) related to the challenges of family
caregiversof PPs inIranwereretrieved.
Relevant MeSH terms and keywords were used to
ensure selected articles included search terms pertaining
to (a) family caregiver and/or mental health disorders;
(b)challengeand/orproblem;(c)caregiverswithpsychiatric
patient; and (d) Iran. Results were combined using the
“AND”Booleanoperatortoensureinclusionofatleastone
search terms from each of the four categories. Retrieved
articleswerescreenedbasedontheinclusionandexclusion
criteria. Inclusion criteria in this study included national
studies exploring the challenges of family caregivers of
patients with mental health disorders. Participants were
family caregivers of patients with mental health disorders
of all ages. Both quantitative and qualitative studies were
included in the study. Exclusion criteria included editorial
and review articles, book chapters, preliminary or pilot
studies, and studies with the primary focus on the patient
andnotfamily caregivers.
Studies with relevant titles and abstracts were included
in the analysis. Relevant articles were then subjected to
critical appraisal which involved assessing the methods
and results sections to nd their strengths and weaknesses
as well as their relevance to the review question. After
applying inclusion and exclusion criteria, the reference
lists of the selected articles were hand searched for
related records, yielding a total of 39 articles for the nal
review[Figure 1].
All retrieved articles were read several times by one
authorandreviewedbythe second author togainadeeper
understandingofthestudies. Datawere extracted based on
the date of publication and sample setting. Core features
ofanalysis were (a)whether the studyfocused specically
onthe challenge orproblem in Iranian family caregiverof
mental health disorders; (b) whether the study was aimed
at the family caregiver or family or both; (c) outcome
measures; (d) methods; (e) content; and (f); results. Then,
based on common meanings and central issues of these
ndings, they were organized and integrated as categories
andthemes.
Ethical considerations
Ethical approval for this study was obtained from Isfahan
University of Medical Sciences, Isfahan Iran (ethical
approval code: IR.MUI.REC.1395.3.250). The included
studies were checked to ensure respecting the participants'
consent.
Results
Ofthe39 included studies,3were conducted before 2005,
10from2005to2010,and26from2010toFebruary2017.
Of these, 21 studies were conducted in a cross‑sectional
mannerin12provincesofIranusingconveniencesampling
with 4582 samples. Ten articles were conducted using an
interventional mode with 512 participants and 8 adopted
a qualitative approach with 170 caregivers; their ndings
could explain the conditions of caregivers of patients with
mental disorders. These studies used a variety of standard
andresearcher‑developedtools.
After completing the review process, the data were
extractedascodesof topics relevant to thereviewquestion
and were qualitatively categorized by the research team
members to nd main themes. The challenges of family
caregiversofPPs in Iran werespeciedas (a) not meeting
the needs of caregivers, (b) burnout and high burden of
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Akbari, et al.: Challenges of family caregivers of patients with mental disorders
Iranian Journal of Nursing and Midwifery Research ¦ Volume 23 ¦ Issue 5 ¦ September-October 2018 331
care, (c) high social stigma, (d) low social support for
caregivers,and (e) lowqualityoflifeofcaregivers.
Not meeting the needs of caregivers
One of the main challenges for family caregivers of PPs
is not meeting their needs. Shamsaei et al. studied the
needsoffamilycaregivers of PPs in theculturalcontextof
Iran in a qualitative study. One hundred six contents were
extracted from the statements of family caregivers of PPs
and classied in ve main themes – illness management,
consulting,economic needs, continuous care, andattention
and understanding of the society. Thus, educational,
economic, and moral supports were among the most
important unmet needs of these caregivers.[16] In another
qualitativestudybyShamsaeiet al.,theneedofcaregivers
toinformationwas oneofthemainchallenges.[17]
In the study by Zeinalian et al. (2011), four problems
and needs that most caregivers considered serious
included lack of sufcient information for the
rehabilitation of patients (98%), despair and suffering of
caregivers due to chronic disease (94%), communication
problems with patients (92%), and not enough time of
caregivers(88%).[18]
Behpajuh et al. showed that the most critical need of
caregivermotherswasinformationaboutthetrainingprocess
andparticipationin educational programsandthe treatment
of their children. Most problems of autistic children were
in the areas of speech, social interaction and emotional
problems,attentionandfocus,issuesoffamily,andcareer.[19]
Currently, the efforts of health authorities in Iran are
towardscaringforPPsathomebesidefamilymembersand
continuing treatment and care in the family environment.
Therefore,identifying and meetingtheneeds of thefamily
caregivers of PPs help the mental health care team apply
propercare interventionsto helpcaregivers andhelp them
intheir care.
Burnout and high care burden
Another important challenge of family caregivers of PPs
in Iran is burnout and high care burden. In the study by
Navidian et al., 26.4% of the caregivers had mild, 60.8%
moderate, and 12.8% high mental pressure, i.e., a total of
73.6% of family caregivers had moderate‑to‑high mental
pressure.[7] Cheemeh et al. showed that the average
burnout of caregivers of male patients was signicantly
higher than the burnout of caregivers of female patients
(24.31versus20.25). General healthscoreofcaregivers of
Figure 1: Matrix pattern of step by step review
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Akbari, et al.: Challenges of family caregivers of patients with mental disorders
332 Iranian Journal of Nursing and Midwifery Research ¦ Volume 23 ¦ Issue 5 ¦ September-October 2018
single patients was lower than the score of caregivers of
married patients, and caregivers of employed patients had
bettermental health(28.69versus.21.28).[20]
In the study by Sharif et al., the score of burden of
care of caregivers was 18.66 and reached 11.44 after
psychological intervention.[21] In a study Shamsaei et al.
examined the meaning of health from the perspective of
family caregivers of patients with bipolar disorder. In
data analysis, six main themes –living hell, psychological
burnout, self‑neglect, need for support, condemned to
isolation, and shame – were extracted. All participants
reportedfeelingsofsadness, internal suffering,lackofjoy,
despair,andemptinessintheirexperiences.[22]
Saleh et al. (2014) obtained a moderate score of social
healthofcaregiversofveterans,12.59.Moreover,18.8%of
thesecaregivers havehad veryhigh socialhealth –22.6%
high,17.6% moderate, 21.6%low,and15.5%verylow.[23]
Abdollahpour et al. obtained the average care burden of
family caregivers caring for patients with dementia (55.2),
implying that the burden of care providers in more than
50%ofthecaregiversofthesepatients(scoreof burden of
care58–116)wasmoderatetosevere.[24]
In their study, Navidian et al. mentioned the burden of
caring of 73.6% of caregivers of PPs as moderate to
severe.[25] In another study, Shamsaei et al. examined
the burden of caring of caregivers of patients with
schizophrenia in Iran; 7.6% of the caregivers had no
burdenofcareorhadverymildformofit,23.5%hadmild
to moderate, 41.8% moderate to severe, and 27.1% had
severeburdenofcare.[26] Hosseini et al.foundthat35% of
caregivershad a scoreofGHQ>23.[27]
As studies showed care pressure of caregivers of mentally
ill patients is high, and it is possible that these pressures
reducethelevelofpatientcareand jeopardize the physical
andmentalhealthofthecaregiver.
High social stigma
Stigma is considered as one of the major challenges of
caregivers. Vagei et al. (2015) obtained the mean (SD)
score of stigma in families of patients with schizophrenia
42.6 (9.2) (out of 68), where the highest mean was for
withdrawalfrom society 12.4 (3.3) and the lowestwas for
loneliness 9.8 (3).[28] In the qualitative study of Shamsaei
et al., experiences of family caregivers of mentally ill
patients in Iran were in three main themes – negative
judgment, shame, stigma and social isolation.[29]
Sadeghi et al. (2004) showed that 49% of caregivers for
schizophrenia, 30% of people from major depressive
disorder (MDD) group, and 50.5% of bipolar group were
complaining about discrimination and ridicule because of
PPsinthe family.[30]
In their study, Shah et al. concluded that 45% of the
caregivers of schizophrenic patients and 32.5% of
depression group were ridiculed and discriminated
against.[31]
Families and those without mental illness (especially at
an early age, particularly at the school level) should be
awareof howcompassionate kindnessleads tostigma and
discrimination and pose obstacles among caregivers and
familyof PPs.
Low social support for caregivers
Social support for caregivers of patients with mental
disorders can be evaluated in four areas, including social
support, information support, moral support, and support
forfamily caregiversofwarveterans.
Social support
One of the very important issues and important
responsibilities of all members of society is social support
of these caregivers because studies show that the social
support for this group is low. Saleh et al. (2014) showed
that 6.8% of these caregivers have very high social
protection, 38.5% high, 21.5% moderate, 18.5% low, and
15%very low.[23]
Beirami et al (2014) showed that social support score
in women taking care of their spouses with post
traumatic stress disorder (PTSD) (28.16) is than normal
people(33.28).[32]
Information support
Other studies in Iran show information support for
these caregivers. In other words, these caregivers have
insufcient information about self‑care and patients.
Mami et al. carried out a program of psycho‑education
supportfor familiesof PPs,which ledto increased mental
health, social functioning, reduced anxiety, and depressive
symptoms; however, the program had no signicant effect
ondecreasing the physicalsymptomsofcaregivers.[33]
The results of Sheikh al‑Islami et al. illustrates that the
average score of psychological well‑being before training
was 224 and after training was 373, i.e. training the skills
of dealing with stress affects the familial mental health of
familiesof people withmentaldisorder.[34]
In two studies, Karamlou et al. (2010) showed that
psycho‑education of families of people with severe
mental disorders has no positive effects on their family
environment. Family psycho‑education increases
expressiveness, mental state, and family solidarity, but it
doesnot change theconictcomponent.[35]
Inastudy,Sharifet al.reportedthatpsychological training
program for families of PPs has a signicant impact on
psychological symptoms (score 4.78 versus. 3.13) and
care burden (score 18.66 versus. 11.45).[36] Studies by
Pahlavanzadeh,Mottaghipour,andKoolaeereportedsimilar
results.[37‑39]
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Iranian Journal of Nursing and Midwifery Research ¦ Volume 23 ¦ Issue 5 ¦ September-October 2018 333
In the study by Omranifard et al., average score of the
pressureimposedon family intheintervention and control
groupsinnone of thethreeperiods,atthebeginningofthe
intervention,3monthsaftertheintervention,and 6 months
after the intervention, had no signicant differences.
Nevertheless, the quality of life in the intervention
group 6 months after the intervention had signicantly
increased.[40]
According to these studies, low information of family
caregivers of patients with mental disorders in Iran is
evident.Comprehensivesupportofcaregiversisoneofthe
requirements and one of the main tasks of all individuals
andorganizationsinIran.
Spiritual support
Another aspect of the protection of these caregivers is
spiritual support and some texts have referred to them.
Shariet al.studied the relationship between the religious
commitment of family caregivers of Iranian context and
consequencesofcare.Positivereligiouscoping(tendencyto
religion),indicatingasense of spirituality,saferelationship
with God, belief meaningfulness of life, and spiritual
relationship with others, has positive outcomes such as
higher self‑esteem, better quality of life, psychological
adjustment, and more spiritual growth in relation to
tension. However, negative religious coping (turning away
from religion) represents less safe relationship with God
and an uncertain and pessimistic view of the world and
has negative consequences such as depression, emotional
distress, and lack of physical health, low quality of life,
andweakproblem solving.[41]
Although Iranian society has entered industrialization,
alongwiththesechanges,religiousbeliefsandvalueshave
preserved their character. Thus, caregivers with greater
moral support have higher mental health that should be
consideredby authorities insupportofcaregivers.
Support for family caregivers of mental veterans of war
Some studies have been conducted on caregivers of
mental veterans in Iran. Noghani et al. (2016) conducted
a study on PTSD veterans’ wives and found perceived
socialsupport,severity of PTSD ofthespouse, and family
economic status as factors affecting (64%) the quality of
lifeofthe caregivers.[42]
Salehet al.obtainedtheaveragescoreofsocialsupportfor
caregiversofveterans(21.2);themostimportantsourcesof
social support were family members followed by relatives
andfriends.Ofthesecaregivers,6.8%haveveryhighsocial
support,38.5%high,21.2%moderate,18.5%low,and15%
verylow.[23]Beiramiet al.showedthatsocialsupportscore
in the women taking care of husbands with PTSD (28.16)
waslessthan thatofnormalpeople(33.28).[32]
However, family caregivers of mental veterans still have
problems and challenges because the sanctity and culture
of sacrice are supported more than other caregivers by
bothofcial and nonofcialsources.
Low quality of life
Aali et al. showed that the mean scores of developmental
functioning of families of autistic children is less than
that of normal children (67.06 versus 80.65). In addition,
regarding interest and attraction to human relationships,
solving common social problem, logical thinking, and
discipline, their ndings showed signicant differences
betweendevelopmentalfunctioningofthefamilyofautistic
children and developmental functioning of the family of
healthychildren.[43]
Toubaeiet al.showed thatthefamiliesofdepressedpeople
have more satisfaction, physical health, and mental health
thanfamilies with otherpsychiatricdisorders.[44]
The study by Peyman et al. showed that 23.9% of
householdshave agreattendencytoaccepttheirpatientsat
home,53.8 have amoderate tendency,and 22.3%have no
tendency.[45]
Keigobadiet al.showedthattheaveragescoreofqualityof
lifeof caregiverswas4.49outof10. Overall,inthisstudy,
the quality of life for caregivers was 17% unfavorable,
76.5% somewhat favorable, and 5.9% favorable. From the
economicviewpoint, 41.7%were weak,50% average,and
8.3%good.[46]Noghaniet al.showedthatthequalityoflife
ofthesecaregiversinallaspectsislowerthantheothers.[42]
Finally, Sharif showed that weak quality of life in women
showstheneedformoreattentiontotreatmentinterventions
ofandsocial support forpromotingwell‑being and quality
oflifein thisgroupofcaregivers.[47]
As seen from the results of this study, carers of mental
patients in Iran have several challenges. Authorities must
resolve these challenges with the proper management of
caregivers.
Discussion
We conducted this study to examine the challenges of
familycaregiversofmentallyillpatientsinIran.Theresults
indicatedthat the challenges faced byfamily caregiversof
mentally ill patients in Iran include not meeting the needs
of caregivers, burnout and high care burden, high social
stigma,lowsocialsupportofcaregivers,andqualityoflife.
The results of the included studies with others conducted
outside Iran show similarities and differences in the
needs of family caregivers of these patients in Iran and
other countries. Ploeg et al. in Canada concluded that
caregivers of PPs need social life, tool support, emotional
support, information support, and telephone access to the
professionaltreatmentteamaswellasaccesstoexperienced
counterparts.[48] Wancata et al. in Austria showed that
relieving social isolation is among the components with a
high percentage among caregivers’ needs, and the fear of
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334 Iranian Journal of Nursing and Midwifery Research ¦ Volume 23 ¦ Issue 5 ¦ September-October 2018
labeling and discrimination has the lowest percentage,[49]
which is justied by cultural differences. Altruism is
consideredoneoftheancient Persian cultures. Iraniansare
notindifferenttothe family andtheirneighbors and social
view is dominant in Iran. Thus, social isolation has no
placeinIran.Another pointisthatexpression of the needs
and problems and caring for PPs are under the inuence
of culture. In Asian countries, unlike European countries,
duetoissues suchashonor,people refrain fromexpressing
theseproblems and hidethem that eventuallyleads toloss
ofsocialsupport.[50]
Interms ofperceivedstigma,familiesofPPs havemedium
and higher levels of stigma.[30,31,51] In the study by Yin
et al.,majorityoffamilycaregiverswerehidingthedisease
of their family members suffering schizophrenia and did
nothavesupportof their friends.[52] InthestudybySanden
et al.,familiesofpatientswithsocialproblemshadlimited
their social relationships with friends due to stigma.[53]
The study of stigma in patients with mental disorders in
IranandSweden showed that Iranians,incomparison with
Swedish,hadfewerstigmasinlonelinessthatcanbedueto
theIslamicbeliefs oftheIranians.[54]
In connection with the burden of caring for PPs, many
studies showed that not only in Iran but also in other
countries the burden of caring for PPs is signicant, and
the psychological and mental health of these caregivers
have many challenges and they often experience a high
percentage of anxiety and depression.[55,56] In a study
on Jamaican Africans, Alexander et al. showed that the
burden of family caregiving is moderate in patients with
schizophrenia.[57]CaregiversofPPsinZimbabweexperience
signicant burden of care,[58] while this is moderate to
severe in Iran. Chien showed that in China care burden of
caregiversof patientswithschizophreniaishigh.[59]
Padierna showed a very high burden of care for patients
witheating disordersinSpain,[60]buttheburdenofcarefor
schizophrenic patients in Iran is more than other patients’
care burden. The ndings of this study show low level of
education of family caregivers of patients was associated
withanincreasedburdenofcare.ZahidandPahlavanzadeh
showed a signicant relationship between high level
of education and burden of care. It is likely that rising
educational levels leads to increased accountability and
understanding of the complexity of their patient care.[61,62]
Gafari et al. showed that education is insufcient for
informalcaregivers’of multiplesclerosispatients.[63]
In the eld of social support of family caregivers of PPs,
it should be stated that Iranian society is sensitive to the
problemsoftheirfellowandhasagreatdesiretoovercome
them, and people unofcially support these caregivers.
However, ofcially, the Deputy of Department of Medical
University nationwide covers acute patients, and welfare
organization covers the treatment of chronic PPs, and
FoundationofMartyrs and Veteranscovers PTSDveterans
andtheirfamilycaregivers.Theseorganizationsare mostly
responsiblefor economic andhealthcaresupport.
Another type of support in Iran is spiritual support.
Perception of caregivers of their care responsibility as
punishmentfromGodorthefeelingthatGodhasabandoned
them is associated with higher levels of symptoms of
depression,whereasfeelingGod’spresenceinthelivesand
preserving religious beliefs and faith could increase their
adaptability by changing caregivers’ perception of care
burden.[54] In general, religion and spirituality can affect
people’s adaptability to stressful situations by providing
a framework for understanding the meaning and cause of
negative events as well as providing a hopeful vision of
life. In fact, religious commitment acts as a buffer against
stress and moderates negative effects of care on health of
caregivers.
Studies in Iran showed that families with PPs have lower
qualityoflife. This ndingisconsistent with otherstudies
on the signicant effects of patient care, especially those
withmentaldisorders.Boyeret al.showedthattheselected
samples from Chile and France were of poor quality of
life.[64] In this regard, Wong et al. concluded that the
stress of caring for a relative with a mental illness could
reduce their quality of life.[65] Hayes et al. considered
the quality of life of caregivers in Australia low as well.
Boyer et al. consider the reason of low quality of family
life in what these families do today for their patients that
was the responsibility of psychiatric centers in the past.
Thus,socialservicesavailabledonotsupply these changes
sufciently.[64]
Overall, caregivers of patients with mental disorders not
onlyinIranbutalsoinmostcountrieshavemanyproblems
andchallengesin coping with mentalillness.Theobjective
and subjective burnout of family increases in cases where
patients with mental disorders are unable to function, are
dependent, or have not learned social skills. Thus, family
members, especially caregivers, due to using energy and
time to provide the care needed, are in danger of reduced
quality of life. They experience great emotional stress
associated with supporting patient, lack of enjoyable
activities, housekeeping problems, feeling of being
unwanted, participation in care, uncertain prognosis, and
lack of access to social support needed. Nurses can offer
training needed such as identifying sources of support,
self‑efcacy techniques, and empowerment to the family,
especiallythe main caregivers.
A literature review in Iran and this study have some
limitations, especially in using standard search terms in
national databases that provide the majority of citations
in national prevalence studies. To overcome this problem,
we used all synonyms of search terms separately in both
Persian and English languages. Another major limitation
was the lack of good coverage in searching universities
researchprojects and student’sthesis.
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Akbari, et al.: Challenges of family caregivers of patients with mental disorders
Iranian Journal of Nursing and Midwifery Research ¦ Volume 23 ¦ Issue 5 ¦ September-October 2018 335
Conclusion
Resultsof this studyshowed that familycaregivers ofPPs
facemany challengesin Iran. Uncertainties in meeting the
needsofcaregivers and thelackoftheirprovision,burnout
andhighcareburden,highsocialstigma,lowsocialsupport
fromcaregivers,andlowqualityoftheirlifewerethemost
important challenges in the literature. Three key elements
inrelationtothesefamiliesshouldneverbeforgotten:rst,
every member of society should respect and pay attention
to the vital role caregivers play, and this can reduce a lot
of stress these caregivers experience. Second, members of
professionalhealthteam should provide moreopportunities
totrainpropercare,supportresourcesinsociety,andproper
communication skills not only for caregivers but also for
membersofthe community byimprovinginterprofessional
approach. Third, ofcials and policymakers can consider
the problems and challenges of these caregivers and by
adopting appropriate legislation facilitate the path of
solving the problems of these caregivers. Therefore, the
need for all‑inclusive support of family caregivers of
patientswith mentalhealthproblemsseemsnecessary.
Acknowledgement
This study is derived from a PhD thesis of Nursing
sponsored by the Isfahan University of Medical Sciences.
The authors are thankful to the Vice‑chancellor for the
approvalof this researchproject(code:395250).
Financial support and sponsorship
IsfahanUniversityof MedicalSciences,Iran.
Conicts of interest
Nothingto declare.
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... 7 Prolonged caring of persons with mental disorders (PWMI) demands considerable amount of time, energy, finance, and other resources. 8 In India, studies have investigated burden and QOL in FCGs of patients with mental disorders, but not investigated change in these variables prior and after interventions. 8 Caregiving covers a range of responsibilities. ...
... 8 In India, studies have investigated burden and QOL in FCGs of patients with mental disorders, but not investigated change in these variables prior and after interventions. 8 Caregiving covers a range of responsibilities. Caregiver burden is usually experienced by those who provide long term care. ...
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Background: Living with and caring for a young adult with mental disorders is often challenging and induce enormous amount of burden and stress to Family Care Givers. This area has not received adequate attention in India. Methods: Caregiver’s Stress scale (KCSS) were used to assess the burden and stress. The family care givers in the intervention group were provided with family-based intervention on two alternative days and the standard care group received only routine care. A post test was conducted on 30th, 90th and 180 days. Independent t -test was used to establish the effectiveness of family-based intervention on burden and stress. X 2 test and Fisher’s test was computed to find the association of burden and stress with selected demographic variables. Results: Family based educational program was found to be effective in reducing the burden of care and stress among the FCGs (p= <0.001). The study revealed statistically significant association between the age and gender of caregiver to burden and financial support of the caregivers to stress Conclusions: The findings of the study suggest family based educational program on home care of young adults with chronic mental disorders was found to be effective in reducing the burden of care and stress among the family caregivers.
... Namun, keluarga yang mengalami tingkat stres yang tinggi, kelelahan, dan stigma sosial cenderung mengalami dampak negatif pada kualitas hidup mereka. Hal ini juga dapat mempengaruhi kualitas perawatan yang mereka berikan kepada anggota keluarga yang mengalami gangguan mental (Amini et al., 2023;Akbari et al., 2018;Kusumawaty et al., 2021). Oleh karena itu, diperlukan sistem dukungan yang komprehensif untuk memenuhi kebutuhan fisik, emosional, dan sosial bagi keluarga yang merawat anggota dengan gangguan jiwa (Amini et al., 2023;Akbari et al., 2018;Aass et al., 2021). ...
... Hal ini juga dapat mempengaruhi kualitas perawatan yang mereka berikan kepada anggota keluarga yang mengalami gangguan mental (Amini et al., 2023;Akbari et al., 2018;Kusumawaty et al., 2021). Oleh karena itu, diperlukan sistem dukungan yang komprehensif untuk memenuhi kebutuhan fisik, emosional, dan sosial bagi keluarga yang merawat anggota dengan gangguan jiwa (Amini et al., 2023;Akbari et al., 2018;Aass et al., 2021). ...
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Abstrak Layanan bantuan pertama psikologi bagi keluarga dengan anggota orang dengan gangguan jiwa (ODGJ) di Desa Jambenenggang, Kabupaten Sukabumi, dilakukan atas kerja sama antara Fakultas Psikologi Universitas Bhayangkara Jaya dan Politeknik Kesejahteraan Sosial (Poltekesos) Bandung. Kegiatan ini bertujuan untuk meningkatkan efektivitas layanan sosial dan dukungan psikologis di masyarakat. Pendekatan ini dirancang untuk meningkatkan kesejahteraan psikologis keluarga serta mendukung pemulihan ODGJ melalui intervensi yang melibatkan sistem dukungan sosial dan komunitas. Melalui kegiatan ini, diharapkan adanya peningkatan kesadaran masyarakat mengenai pentingnya dukungan psikologis, serta pengurangan stigma terhadap ODGJ. Hasil kegiatan menunjukkan adanya peningkatan kapasitas UILS dan perbaikan kesejahteraan psikologis keluarga ODGJ, yang berkontribusi pada terciptanya lingkungan yang lebih inklusif dan mendukung. Kegiatan ini memperlihatkan pentingnya dukungan psikososial berbasis komunitas dalam meningkatkan kualitas hidup keluarga ODGJ di daerah pedesaan. Kata Kunci: Gangguan jiwa, kelembagaan, dukungan psikologis, keluarga. PENDAHULUAN Desa Jambenenggang, Kabupaten Sukabumi, menghadapi berbagai tantangan dalam penyediaan layanan sosial dan dukungan psikologis untuk masyarakatnya. Tantangan tersebut tidak lepas dari keterbatasan sumber daya, rendahnya tingkat pendidikan warga, serta kondisi geografis yang sulit diakses. Berbagai penelitian menunjukkan bahwa akses terhadap layanan kesehatan mental di daerah pedesaaan sering kali terhambat karena keterbatasan infrastruktur dan kurangnya tenaga profesional yang memadai (Santoso, 2020). Di Desa Jambenenggang, kondisi ini semakin rumit ketika ada keluarga yang memiliki anggota yang menderita gangguan jiwa (ODGJ). Gangguan mental tidak hanya mempengaruhi individu yang mengalaminya tetapi juga dapat mempengaruhi kesejahteraan emosional dan fisik keluarga mereka. ODGJ adalah individu yang mengalami gangguan mental berat sehingga berdampak pada kemampuan mereka untuk menjalankan aktivitas sehari-hari (WHO, 2017). Menurut Kartika (2019), keluarga dari ODGJ sering kali mengalami tekanan emosional, sosial, dan finansial dikarenakan harus merawat anggota keluarga yang
... Namun, keluarga yang mengalami tingkat stres yang tinggi, kelelahan, dan stigma sosial cenderung mengalami dampak negatif pada kualitas hidup mereka. Hal ini juga dapat mempengaruhi kualitas perawatan yang mereka berikan kepada anggota keluarga yang mengalami gangguan mental (Amini et al., 2023;Akbari et al., 2018;Kusumawaty et al., 2021). Oleh karena itu, diperlukan sistem dukungan yang komprehensif untuk memenuhi kebutuhan fisik, emosional, dan sosial bagi keluarga yang merawat anggota dengan gangguan jiwa (Amini et al., 2023;Akbari et al., 2018;Aass et al., 2021). ...
... Hal ini juga dapat mempengaruhi kualitas perawatan yang mereka berikan kepada anggota keluarga yang mengalami gangguan mental (Amini et al., 2023;Akbari et al., 2018;Kusumawaty et al., 2021). Oleh karena itu, diperlukan sistem dukungan yang komprehensif untuk memenuhi kebutuhan fisik, emosional, dan sosial bagi keluarga yang merawat anggota dengan gangguan jiwa (Amini et al., 2023;Akbari et al., 2018;Aass et al., 2021). ...
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Abstrak Layanan bantuan pertama psikologi bagi keluarga dengan anggota orang dengan gangguan jiwa (ODGJ) di Desa Jambenenggang, Kabupaten Sukabumi, dilakukan atas kerja sama antara Fakultas Psikologi Universitas Bhayangkara Jaya dan Politeknik Kesejahteraan Sosial (Poltekesos) Bandung. Kegiatan ini bertujuan untuk meningkatkan efektivitas layanan sosial dan dukungan psikologis di masyarakat. Pendekatan ini dirancang untuk meningkatkan kesejahteraan psikologis keluarga serta mendukung pemulihan ODGJ melalui intervensi yang melibatkan sistem dukungan sosial dan komunitas. Melalui kegiatan ini, diharapkan adanya peningkatan kesadaran masyarakat mengenai pentingnya dukungan psikologis, serta pengurangan stigma terhadap ODGJ. Hasil kegiatan menunjukkan adanya peningkatan kapasitas UILS dan perbaikan kesejahteraan psikologis keluarga ODGJ, yang berkontribusi pada terciptanya lingkungan yang lebih inklusif dan mendukung. Kegiatan ini memperlihatkan pentingnya dukungan psikososial berbasis komunitas dalam meningkatkan kualitas hidup keluarga ODGJ di daerah pedesaan. Kata Kunci: Gangguan jiwa, kelembagaan, dukungan psikologis, keluarga. PENDAHULUAN Desa Jambenenggang, Kabupaten Sukabumi, menghadapi berbagai tantangan dalam penyediaan layanan sosial dan dukungan psikologis untuk masyarakatnya. Tantangan tersebut tidak lepas dari keterbatasan sumber daya, rendahnya tingkat pendidikan warga, serta kondisi geografis yang sulit diakses. Berbagai penelitian menunjukkan bahwa akses terhadap layanan kesehatan mental di daerah pedesaaan sering kali terhambat karena keterbatasan infrastruktur dan kurangnya tenaga profesional yang memadai (Santoso, 2020). Di Desa Jambenenggang, kondisi ini semakin rumit ketika ada keluarga yang memiliki anggota yang menderita gangguan jiwa (ODGJ). Gangguan mental tidak hanya mempengaruhi individu yang mengalaminya tetapi juga dapat mempengaruhi kesejahteraan emosional dan fisik keluarga mereka. ODGJ adalah individu yang mengalami gangguan mental berat sehingga berdampak pada kemampuan mereka untuk menjalankan aktivitas sehari-hari (WHO, 2017). Menurut Kartika (2019), keluarga dari ODGJ sering kali mengalami tekanan emosional, sosial, dan finansial dikarenakan harus merawat anggota keluarga yang
... Caregivers, including family, relatives, friends, voluntary and non-governmental organisations, and religious groups, are accountable for providing care for people suffering from mental illness. But when it comes to patient care and preventing readmission, family members (parents, siblings, and spouses) are the most crucial players [6,7]. The WHO recognised that families were the primary providers of care for people with mental illnesses [8]. ...
... The challenges faced by carers of individuals suffering from mental illness included an inability to meet their needs, burnout, heavy care pressure, a high level of social stigma, a shortage of social support, and a poor quality of life [6]. Using an adjusted odd ratio in logistic regression, important variables pertaining to the burden carers bear for individuals with mental illnesses were collected at the time of data extraction for each individual study. ...
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Background Caring for people with mental illness requires a significant investment of personal physical, mental, social, and financial resources, which greatly impact the daily lives of caregivers. The process of providing care is multifaceted and intricate, involving both positive and negative emotional responses. Burden of care is a term used to describe the negative effects of caregivers’ burden on their physical, psychological, social, and economic well-being. Therefore, the aim of this systematic review and meta-analysis is to provide an overview of the most recent information available regarding the pooled prevalence of burden of care among people with mental illness in Africa. Methods In this study, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), which is a suitable guideline for reports of systematic reviews and meta-analyses. The PROSPERO protocol number for this review is CRD42024499138. To find publications for the systematic review and meta-analysis, we used PubMed, MEDLINE, EMBASE, Cochrane Library, and Scopus databases. The Joanna Briggs Institute (JBI) for cross-sectional study quality assessment was employed to evaluate the methodological quality of the studies included in this review. The data was extracted in Microsoft Excel, and then it was exported into STATA 11.0 for analysis. A funnel plot and an objective examination of Egger's regression test were used to check for publication bias. Results We have included 12 studies conducted in African countries with 2156 study participants, of whom 1176 (54.55%) were female individuals. In this meta-analysis, the pooled prevalence of burden of care among caregivers of people with mental illness in Africa was 61.73 (95% CI: 51.25–72.21%). Further, in subgroup analysis regarding the study country, the pooled prevalence of carer burden among caregivers of people with mental illness in Egypt and Nigeria was 79.19% and 55.22%, respectively. Conclusion This review found a high pooled prevalence of caregiver burden related to mental illness in Africa. To minimize the challenges faced by individuals with mental illnesses, as well as the burden on their caregivers, stakeholders may find these findings useful for addressing prevention, early screening, and management.
... Caregiving to patients with SMI seriously affects FCs [7] and causes them different problems and challenges [8][9][10] such as stress, anxiety, boredom, depression, and burnout [8]. These problems and challenges are associated with heavy caregiver burden (CB) [9,10]. ...
... CB refers to physical, mental, emotional, and financial problems for FCs due to the responsibility of caregiving to a family member with chronic illness. A study reported that 73.6% of the FCs of individuals with mental disorders suffered from moderate to high levels of mental strain [7]. Heavy CB has significant negative effects on different aspects of FCs' lives, such as their quality of life, life expectancy, roles, and social interactions [11]. ...
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Background Serious mental illness (SMI) is a debilitating medical condition that causes stress and challenges for the family caregivers (FCs) of affected patients, increasing their caregiver burden (CB). This situation can activate attachment styles (AS) and trigger negative emotions, further contributing to CB. Given that AS and cognitive-emotional regulation (CER) can affect the CB of FCs of patients with SMI, the aim of this study was to evaluate the relationship between CB with AS, and CER among the FCs. Methods This cross-sectional descriptive-correlational study was carried out in May–November 2022. Participants were 278 FCs of patients with SMI consecutively recruited from Roozbeh leading psychiatric hospital, Tehran, Iran. Data were collected using a patients’ demographic and clinical characteristics questionnaire, an FCs’ demographic characteristics questionnaire, the Attachment Style Questionnaire, the Cognitive Emotion Regulation Questionnaire, and the Burden Scale for Family Caregivers, and were analyzed using the SPSS software (v. 16.0). Results CB had significant inverse relationship with secure AS (r = − 0.262) and significant positive relationship with fearful AS (r = 0.194) and dismissive AS (r = 0.242) (P < 0.01). Moreover, CB had significant inverse relationship with adaptive CER strategies and significant positive relationship with maladaptive CER strategies (P < 0.001). Regression analysis also showed that CB had significant relationship with secure AS and catastrophizing, rumination, self-blame, and positive refocusing CER strategies (P < 0.05). Conclusion This study concludes that AS and CER can impact CB. There is a negative relationship between secure AS and CB, as well as between adaptive CER strategies and CB. Conversely, there is a positive relationship between avoidant AS and increased CB, as well as between maladaptive CER strategies and CB. It is recommended to adopt strategies that promote the use of secure AS and adaptive CER among the FCs of patients with SMI.
... Moreover, the rates of objective and subjective burden among carers of individuals with BPD were higher than that experienced by significant others of people with other mental disorders (Bailey and Grenyer 2013;Kirtley et al. 2019;Seigerman et al. 2020). Several studies reported feelings of powerlessness (Bauer et al. 2012;Ekdahl et al. 2011), lifelong grief (Bailey and Grenyer 2014), interpersonal difficulties (Giffin 2008), and social stigma (Akbari et al. 2018;Bailey and Grenyer 2014;Hoffman et al. 2005;Kirtley et al. 2019) among carers of people with BPD. The family environment of people with a diagnosis of BPD showed high levels of expressed emotion such as criticism and emotional over-involvement (Bailey and Grenyer 2015;Kirtley et al. 2019;Seigerman et al. 2020). ...
Article
Borderline personality disorder (BPD) has a strong impact not only on patients' lives but also on their families. The presence of an invalidating environment is one of the key factors in the etiology of BPD. This study evaluated the impact of the Family connections (FC) program on burden, grief, and other clinical variables in 202 caregivers and identified the profiles of participants who improved/deteriorated their levels of burden and grief. Findings from generalized linear mixed models showed significant reductions in burden, grief, depression, global psychological distress, and suppressed and expressed anger after FC intervention. Two classification trees were applied to test whether improvements in burden and grief were associated with age, gender and the improvements in other clinical variables. Caregivers reporting reduced depression were more likely to improve in both burden and grief. Moreover, younger participants showing increased depression had a 72.7% probability of being part of the improvement in burden and a 66.7% probability of being part of the improvement in grief. A decrease in depression and having a younger age were associated with positive gains for caregiving burden and grief. Longitudinally, ANOVAs showed positive changes in burden and grief as well as decreased depression, global psychological distress and suppressed anger were maintained at 4‐month follow‐up. Present findings improve our understanding of the utility of the FC program for caregivers of people with BPD. The impact of depressive symptoms' reduction and being younger on perceived burden and grief highlight the importance of exploring additional possible moderators of outcomes in FC intervention. Trial Registration: NCT06076343; NCT06074289. Registered 10/10/2023
... practice from health care professionals and services (Akbari et al., 2018;Lynch et al., 2018). These encounters do not appear to be isolated to particular subgroups of patients or type of overshadowing condition (Werner et al., 2012). ...
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Diagnostic overshadowing refers to interference with medical diagnosis or treatment due to a preexisting condition. We describe the development and preliminary psychometric evaluation of the Concerns with Diagnostic Overshadowing Scale (CDOS) from the perspective of patients with a mental or behavioral health condition and their carers. In Study 1, a draft pool of items is developed from published qualitative research and feedback from 32 patients. In Study 2, factor analysis on responses to these items from 293 patients (Mage = 33.9, SD = 10.3) reveals a three-factor CDOS model consisting of diagnostic overshadowing experiences, anticipatory concealment, and internalization. Analyses confirm adequate internal consistency, factor discriminability, and test–retest reliability of these CDOS subscales at 1-year follow-up. Structural equation modeling provides convergent evidence of construct validity in relation to measures of health care–related delays and distrust, and discriminant evidence in relation to mental illness stigma and health locus of control. In Study 3, measurement invariance testing of responses to the CDOS from 87 carers (Mage = 32.5, SD = 7.5) supports configural and metric invariance of the three-factor CDOS model, but poor scalar invariance due to higher baseline levels of CDOS experienced and concealment in patients relative to carers. Our results add to evidence that stigma extends into health care settings and that patients and carers can perceive and react to this stigma in a manner that is potentially problematic for the therapeutic relationship.
... Understanding the determinants and impacts of psychosis is pivotal for effectively managing affected individuals. Without this understanding, healthcare professionals risk excluding caregivers and family members of psychotic patients from the information of essential treatment and decision-making processes, potentially rendering them "hidden patients" [15] . The forthcoming study endeavours to comprehensively identify these determinants and impacts, striving to alleviate the suffering experienced by individuals with mental illness and their families by providing essential knowledge and information. ...
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The aim of the study is to determine whether the biological, psychological, and social components contributing to psychotic illness and examine their effects on families across social, financial, emotional, and health dimensions. A Population Proportion Formula was used to determine the sample size, applying a theoretical approach to a sample of approximately 200 caregivers of psychotic patients in Kathmandu, Nepal. Quantitative data were gathered via questionnaires. Nonclinical data were used for analysis. Findings from the analysis of Objective 1 revealed that social determinants were most reported; however, biological and psychosocial factors were also prevalent. These determinants were both directly and indirectly linked to psychological or emotional factors, aligning with the biopsychosocial (BPS) model developed by George Libman Engel of the University of Rochester Medical Center, New York. The biopsyhosocial (BPS) model was formulated in the mid-1970s, with significant discussion of the model occurring in a seminal article published in 1977 in the journal Science. For Objective 2, results showed that the emotional impact on families was the most prominent, followed by social, financial, and health impacts. The findings show that emotional effects have the greatest influence, followed by financial, social, and health effects. These results reinforce the need for further research into the factors associated with psychotic disorders and their effects on families.
... Recent studies have delved into the challenges faced by families of individuals with mental disorders [14], as well as the psychological and social hurdles encountered by youth with chronic illnesses [15] and migrants during the pandemic [16]. Moreover, there's emerging research on the interplay between psychological disorders and medical conditions [17], such as cardiovascular diseases [18]. ...
Article
Background Emotion regulation strategies help family caregivers of chronic psychiatric patients to manage caring behaviors. However, evidence pointed out problems and therefore a need to execute respective programs to improve emotion regulation for caregivers. This study aimed to investigate the effectiveness of mental health literacy promotion programs on emotion regulation strategies of family caregivers of chronic psychiatric patients. Materials and Methods This is a clinical trial study, with two-group pretest–post-test design with a follow-up period conducted in 2023. Sixty family caregivers of chronic psychiatric patients were randomly allocated to intervention control groups. Data collection was done using a demographic characteristics questionnaire and Gross and John’s Emotion Regulation Scale. The mental health literacy promotion program was implemented for the intervention group in six sessions weekly. Immediately and 1 month after the last meeting, the questionnaires were completed. The data were analyzed using Chi-squared and Fisher’s exact tests, Mann–Whitney test, and analysis of covariance by SPSS-22. The significance level was set to 0.05. Results The results showed that the frequency distribution of demographic variables in the control and test groups had no statistically significant difference ( p > 0.05). The intervention had significant effects on the mean score of emotion regulation strategies, and its subscales included re-evaluation and suppression of family caregivers of chronic psychiatric patients in both the post-test and follow-up periods ( p < 0.001). Conclusions According to improving the emotion regulation of family caregivers of chronic psychiatric patients through the mental health literacy promotion program, it is suggested to use this program to achieve the desired emotion regulation.
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Background Approximately one-third of people suffering from multiple sclerosis (MS) need long-term care by their families, however, we know little of their experiences. Exploring these experiences can be a guideline to improve the quality of care for MS patients. The goal of this study is to explore informal caregivers' experiences regarding care of MS patients. Materials and Methods A qualitative content analysis method was used to conduct this study in 2014. The study participants were 23 informal caregivers of MS patients who were chosen by purposeful sampling from the MS association of Iran. Data was analyzed by content analysis. Results The analysis resulted in the emergence of six themes and seventeen subthemes. The main themes were being plagued, mental health damage, being captive among obstacles, perception of the affected family, being an emotional supporter, and need to maintain the functional independence of the patient. Conclusions The findings represent the mean of long-term care by informal caregivers of MS patients, as well as the needs and challenges of this relationship. The findings can serve to create a framework for developing nursing care processes and planning educational sessions and support programs for MS patients and their informal caregivers.
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Background Mental health service resources are inadequate in low-income countries, and families are frequently expected to provide care for their relative with a mental disorder. However, research on the consequences of caregiving has been limited in low-income countries, including Zimbabwe. Objective The study explored the perceived impact of mental illness, reported coping strategies and reported needs of the family members of persons diagnosed with bipolar affective disorder or schizophrenia attending a psychiatric hospital in Harare, Zimbabwe. Methods A purposive sample of 31 family members participated in in-depth interviews and focus group discussions using standardised study guides. Participants were also screened for common mental disorders (CMDs) using the 14-item Shona Symptom Questionnaire. Qualitative data were analysed thematically using NVivo 8 qualitative data analysis software. Statistical Package for Social Sciences (SPSS version 16) was used for descriptive quantitative data analysis. Results Caregivers experienced physical, psychological, emotional, social and financial burdens associated with caregiving. They used both emotion-focused and problem-focused coping strategies, depending on the ill family members’ behaviours. Seeking spiritual assistance emerged as their most common way of coping. Twenty-one (68%) of the caregivers were at risk of CMDs (including three participants who were suicidal) and were referred to a psychiatrist for further management. Caregivers required support from healthcare professionals to help them cope better. Conclusion Caregivers of patients attending psychiatry hospitals in Zimbabwe carry a substantial and frequently unrecognised burden of caring for a family member with a mental disorder. Better support is needed from health professionals and social services to help them cope better. Further research is required to quantitatively measure caregiver burden and evaluate potential interventions in Zimbabwe.
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Objective: The aim of this study ‎was to determine the prevalence ‎of the burden reported by family ‎caregivers of Patients with ‎schizophrenia.‎ Methods: This cross sectional ‎study involved face-to-face ‎interviews with family caregivers ‎of patients with schizophrenia. ‎Using convenience sampling, ‎‎225 caregivers were selected ‎from Farshchian psychiatry ‎Hospital in Hamadan, Iran from ‎July to September 2012. ‎Measures included patients and ‎caregivers' demographic ‎variables and caregivers' burden ‎using the Zarit Burden Interview ‎‎(ZBI). Data were analyzed by ‎SPSS-18 with Pearson ‎correlation and t-test.‎ Results: Using the ZBI, we found ‎that 7.6% of the caregivers ‎experienced "no to low" burden, ‎‎23.5% "mild to moderate", 41.8% ‎‎"moderate to severe" and 27.1% ‎‎"severe" burden. The mean ‎average score of the responses ‎to ZBI was 51.73 (SD: ± 18.23). ‎The level of burden experienced ‎was significantly associated with ‎age, gender, and educational ‎level, relation to care recipient, ‎caregiving duration and duration ‎of schizophrenia illness.‎ Conclusion: ‎ ‏ ‏Mental health ‎professionals need to develop ‎more innovative programs for ‎families of schizophrenic ‎patients. Furthermore, as a ‎replacement for supporting the ‎families and easing their ‎burdens, it may be more ‎effective to include them in the ‎health care team by assigning ‎specific tasks and providing the ‎required resources to them to ‎perform such tasks. ‎.
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Background: Family caregiving for patients with chronic mental illness is influenced by various factors such as political, socioeconomic, and cultural contexts as well as related policies and health services. Objectives: The purpose of this study was to explore the challenges with which the family caregivers of patients with chronic mental illness have to contend. Materials and methods: The research design was qualitative with a phenomenological approach. The research population consisted of 16 long-term carers expressing interest in participating in the project. The carers were the family members of mentally ill relatives who collected their monthly medications at Farshchian Psychiatry Hospital in Hamadan in 2012. Purposive sampling was used to draw the sample. Data were collected by individual in-depth semi-structured interviews, which were tape-recorded and analyzed via Colaizzi's phenomenological method. Rigor was assessed regarding credibility, dependability, conformability, and transferability. Results: Our findings highlighted 4 main themes, namely stress and emotional distress, need for education and information, socioeconomic effects and support, and physical strain. Conclusions: Families experience frustrations when providing support and care to their mentally ill relatives. They, therefore, need appropriate support and intervention by mental health services.
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Background and aims: Considering the consequences of family caregiving for patients with chronic illness on family caregivers' mental health and well-being, this study investigates the effectiveness of group problem-solving training in reducing the burnout of caregivers' women of Family Member with chronic illness. Methods: This is a semi-exprimental study with control group, pre-and post- test & follow- up design. Statistical sample included 40 caregiver women who were selected by purposive sampling among family caregivers referred to medical centers in Falavarjan. Participants were randomly assigned into two control and case groups (n=20). The case group participated in 8 Problem-solving training sessions. The both groups completed the Maslach Burnout Inventory in pre-and post tests and follow- up (2 months after the performance of educational program). Data were analyzed using Repeated Measure Analysis of Variance. Results: The case group reported lower mean scores for emotional exhaustion and depersonalization, but higher mean scores for personal accomplishment than the control group (P<0.01). Conclusion: The findings of this study shows the effectiveness of group problem-solving training in reducing the caregivers' burnout and it might be effective for determining the pereventive planning and treatment strategies for family caregivers.
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Abstract Background : Families of patients with mental disorder endure remarkable hardship for coping with psychiatry symptom and they confront physical and emotional stresses. Maintaining and improving the quality of life is an important task for nurses. This study was designed to Determination of Quality of life in Caregivers of Patients with mental disorder in Fatemie hospitals of Semnan university of Medical Sciences. Method : A descriptive design was used. Samples consisted of Caregivers of Patients with mental disorder (Schizophrenia, Mania, Major Depressuon( took part in this study. Data were gathered by questionnaire (Quality of life family version) in domains: physical, psychological, social and spiritual. Validity through content validity and reliability with a Cronbach's Alpha / was approved. Data were analyzed using SPSS software. Results : Most Caregivers of Patients with mental disorder are Female ( ) with a mean age of years and patient's wife ( ). The results of study showed that, majority of caregivers record at in physical ( . ), psychological ( ), social ( ) and in spiritual ( . ) as partly desirable level and the QOL scores of caregivers was . from . There was a significant association between quality of life and duration of caregiving (p = / ). Conclusion : copping with disease crisis and explore reasonable about further is more important. Nurses necessary to understand the necessity of family to support and give information. This issue improves Health and Well-being in families. Key words : Quality of life, caregivers, mental illness, Schizophrenia, Mania, Major Depressuon.
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Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few. Purpose: We evaluated a one-to-one psychoeducational intervention aimed at mitigating the distress of caregivers of patients with advanced cancer receiving home-based palliative care. We hypothesised that caregivers would report decreased distress as assessed by the General Health Questionnaire (GHQ). Method: A randomised controlled trial comparing two versions of the delivery of the intervention (one face-to-face home visit plus telephone calls versus two visits) plus standard care to a control group (standard care only) across four sites in Australia. Results: Recruitment to the one visit condition was 57, the two visit condition 93, and the control 148. We previously reported non-significant changes in distress between times 1 (baseline) and 2 (1-week post-intervention) but significant gains in competence and preparedness. We report here changes in distress between times 1 and 3 (8-week post-death). There was significantly less worsening in distress between times 1 and 3 in the one visit intervention group than in the control group; however, no significant difference was found between the two visit intervention and the control group. Conclusions: These results are consistent with the aim of the intervention, and they support existing evidence demonstrating that relatively short psychoeducational interventions can help family caregivers who are supporting a dying relative. The sustained benefit during the bereavement period may also have positive resource implications, which should be the subject of future inquiry.