Caregiver Burden, Quality of Life and Empowerment Intervention

in Caregiver Family with Schizoprenia

A Systematic Review

Sri Widowati

, Shrimarti Rukmini Devi

and Hanik Endang Nihayati

Faculty of Nursing Universitas Airlangga, Kampus C Mulyorejo, Surabaya, Indonesia

Faculty of Public Health, Health Promotion and Behavioral Sciences, Universitas Airlangga

Keywords: Caregivers Burden, Quality of Life, Empowerment Intervention and Schizofrenia.

Abstract: Schizophrenia is chronically and schizophrenia suffer has duration of disease long time so that the risk of

remission and relapse and quality of life is not well. Many factors that can lead to it occurs, among others,

preparation and knowledge of care giver family and the availability of resources in society, of this care can

lead to positive and negative impacts, include the care and quality of life of caregiver. This research aimed

to review the 15 journals that discuss about caregiver burden, quality of life and empowerment intervention

of caregiver family with schizophrenia. Methods: 15 journal articles in accordance with the purpose of writing.

Results: From the results of the study it was found that the majority of care givers were women (82%) and

housewives (67%) .The 60 samples of 40 care givers (67%) experienced a severe burden in caring for their

families and 8.33% such as diabetes mellitus and hypertension (George Reena and Raju S., 2015). While

physical illness and fatigue in care giver significantly associated with social support also correlates with the

patient's negative symptoms (Kokurcan Ahmet et al, 2015). Conclusion: Each caregiver has different positive

and negative effects, this is because many factors influence it.

1 BACKGROUND

Schizophrenia is a chronic mental disorder in which

the patient experiences delusions, hallucinations,

impaired thought processes, concentration and lack of

motivation. With a wide variety of causes and

symptoms for every schizophrenic (Vajeena Bhanu

and Anuradha, 2017). Schizophrenia is one form of

severe mental disorders and runs chronically even

many patients have a long duration of symptoms.

Several studies showed that about 20% of

schizophrenics did not show improved symptoms and

even increased symptoms of disability, 35% showed

mixed patterns with different degrees of remission

and exacerbations (Chien, Chan & Morrissey 2007 in

Sally Wai-chi Chan , 2011). Approximately 25% -

50% of people with schizophrenia live with family

and the care performed by the family depends on the

symptoms and disability of each patient (Yip, 2000 in

Sally Wai-chi Chan, 2011). Schumacher (2000) in

Sally Wai-chi Chan, 2011 reveals various factors can

affect the rehabilitation process of patients in families

and communities. Like the level of preparation,

knowledge and skills of family caregivers and the

support of resources in the community. If the

caregiver does not have sufficient knowledge and

skills and support, the caregiver may not perform

well, causing relapse and hospitalization again (Chien

& Chan, 2005 in Sally Wai-chi Chan, 2011).

These situations will affect the patient as well as

the family especially the family members who have

the duty as caregiver. The duties and responsibilities

that the caregiver has to take can lead to a burden of

upbringing. Caregiver, gender, patient relationships,

education, economic status, severity of disease,

ethnicity and culture of local communities, problem-

solving skills, trust, social support, is a personal factor

associated with parenting burden. Care will be done

at all times, the risk of loneliness and often

overcoming many new problems (Kerime Bademli

and Neslihan Lök, 2015).

In the nurturing process for schizophrenics,

family caregivers often bear economic and material

burdens. In addition, psychosocial burden is also

affected. Stigma is one of the greatest psychosocial

Widowati, S., Devi, S. and Nihayati, H.

Caregiver Burden, Quality of Life and Empowerment Intervention in Caregiver Family with Schizoprenia.

DOI: 10.5220/0008328305470551

In Proceedings of the 9th International Nursing Conference (INC 2018), pages 547-551

ISBN: 978-989-758-336-0

547

burdens faced by family members or caregivers of

schizophrenics. Psychosocial burden on family

members with schizophrenics negatively affects

family members and their loved ones (Girma E., et al,

2014). Caring charges are classified as objective and

subjective burdens. The objective burden is a burden

on the cost of care. Subjective burden is an individual

situation and an individual's assessment of emotional

distress triggered by the disruptive behavior of the

patient. Families often complain that they undergo a

negative experience, which may lead to a decreased

quality of life of caregivers and schizophrenics

(Kerime Bademli and Neslihan Lök, 2015). The

purpose of this article is to identify the caregiver

burden, quality of life and empowerment intervention

caregiver with schizophrenia.

2 METHODS

A systematic review of the much databases was

carried out to access relevant articles published

between 200 and 2018.Twenty-one articles met the

conclusion criteria of this study.

3 RESULTS

The majority of caregivers are women (82%) and

housewives 67% (Reena George & S. Raju, 2015),

while in research Girma et al, 2014 caregiver is more

dominated by men (70.38%). Psychological burden

experienced by caregiver include stress from mild to

severe, (67%) caregiver experience heavy burden in

caring for schizophrenia (Reena George & S. Raju,

2015). Care giver's burden and quality of life are

significantly worse for caregivers who treat patients

with physical and mental illness (Amelia Rizzo,

Marco Liotta, and Carmela Mento, 2014). 80% of

caregivers experience moderate load levels, higher

loads on older caregivers, caregivers and partners

(Gupta A., et al, 2015). It was found that 8.33% of

caregivers were treated with physical ailments such

as diabetes mellitus and hypertension (Reena George

& S. Raju, 2015).

In caregiver loads there are 5 dimensions of

burden, nanny anxiety is the highest, then the

dependence of the patient, feelings of shame and guilt

and family ties. The stigma load level is the lowest.

The three main things found in this study in parenting

are: 'I worry about his safety when he's alone', 'I'm

afraid he'll get sick all the time', and the patient's SRB

score significantly indicates that patients are satisfied

with the support of medical staff, CHQ scores of

significant nurses with caregiver load scores (Ying

Hou, et al, 2008). In parenting, the most detrimental

to caregivers are those who show the reason for caring

for a sense of responsibility rather than out of

compassion. As well as indicating that the load time

required and quality of life becomes lower. (Amelia

Rizzo, Marco Liotta, and Carmela Mento, 2014).

The majority (72%) carers use long distance and

seek social support as their coping strategy. There is

no correlation between perceived stress, coping and

burden of care on schizophrenic caregiver. There was

a significant negative correlation between income and

stress perceptions As well as a significant positive

correlation between stress perception and age and

duration of care (Reena George & S. Raju, 2015). The

low perceived social support scale is significantly

correlated with all subscales of The Maslach Burnout

Inventory for cargivers, resulting in burnout

syndromes in caregivers correlated with perceptions

of social support (Ahmet K., et al, 2015). In other

studies conducted in two areas of the city and the

village it was found that there was no significant

difference in the psychological pressure of family

caregivers between the town and village. But

caregivers in Guangzhou were significantly able to

adopt eight coping strategies: facing problems,

distancing, controlling, seeking social support,

accepting responsibility, no longer escaping,

objective problem solving and positive reassessment,

rather than caregivers in Hong Kong (Paul CW Lam,

Peter Ng, Jiayan Pan, and Daniel KW Young, 2015).

Using bivariate analysis that factors of disability,

frequency of schizophrenia recurrence, schizophrenia

severity, residence, and socioeconomic status have a

significant relationship with custody. Since disability

factors are the highest, then interventions focusing on

reducing disability in the management of

schizophrenia can help reduce the burden of parenting

care (Arun R, et al., 2018). The data analysis used

multiple regression model to assess cost covariate,

care provider burden, and QoL. Direct costs are

medicine (50%) and transportation (27%). 49% of

caregivers report a high burden. Better educated

carers report lower indirect costs and better QoL.

Caregivers with higher levels of depression, anxiety

and stress report higher parenting burden and lower

QoL. While the male caregiver has a better QoL (Yaw

Nyarko Opoku-Boateng, 2017).

There are other factors associated with parenting

burden: the negative symptoms that occur in the

patient, the burden subdomain (burden on welfare, the

burden of marriage, the burden of the relationship,

and the load due to the perceived severity) is a

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research

548

subjective load predictor. While the burden on the

welfare and age of respondents is a predictor of

psychological pressure (Elangovan Aravind Raj,

Sahana Shiri, and Kavita V Jangam, 2016). In another

study it was found that disease duration,

psychopathology and disability factors were

significantly correlated with total load scores; the

perceived social support has a significant inverse

correlation with the total load score. While

psychopathology has a high relationship with

disability. With separate regression analysis,

indicating that duration of disease and perceived

social support are significant predictors of burden in

addition to psychopathology and disability (Aarti

Jagannathan, et al, 2014).

Actions of parenting are not much different in

patients despite different diagnoses, but the role of

parenting will change from active involvement

physically and medical care increases with social and

psychological care during recurrence (Navaneetham

Janardhana, et al, 2015). Lower psychological well-

being is found in older caregivers and low education

status. And psychological well-being is higher in

siblings. A strong negative correlation was found

between parental care and psychological well-being

(Gupta A., et al, 2015).

In addition to the burden of care that is the impact

of treatment of schizophrenia, stigma is also a

condition that can occur due to schizophrenia.

Significant differences in self-stigma scores between

urban and rural respondents. Self-caregiver stigma

shows a positive correlation with signs of perceived

mental illness, a supernatural perception of mental

illness, and psychosocial and biological perceptions

of mental illness (Girma E.et al, 2014). Family

caregivers in this case are parents, lack of education,

and lower monthly household income, increased

stigma and decreased quality of family-centered care

experience of poor health-related quality of life.

Especially in monthly household income, affiliation

stigma and quality of family-centered care are the

most important factors that lead to improved health-

related quality of life (Chiu-Yueh Hsiao, et al, 2017).

Problems experienced by caregivers and families

in running care for people with schizophrenia

certainly makes the scientists interested in providing

intervention to caregivers and patients, as well as

many models of empowerment of caregivers who

have been done. One of them is in community-based

project MAANASI able to reduce the burden of care.

The welfare factors of caregivers, marital

relationships, appreciation for caregivers, severity of

illness, and relationships with others are significantly

correlated with the type of mental illness. The burden

on caregivers is generally lower than expected,

probably due to interventions being undertaken at

community-based MAANASI projects. (Swaroop N.,

et al, 2013). Other studies of carer-based

empowerment interventions were conducted with a

three-step approach: preliminary assessment of

caregiver loads, caregivers in empowerment-based

intervention sessions, and assessment of care

expenses after empowerment interventions.

Significant differences in the perceived burden

between before and after intervention (S. Vajeeha

Bhanu & Dr. Anuradha K., 2017).

Psychoeducation interventions also have

beneficial effects on family cohesion, global family

burdens, objective family burdens, and symptoms of

family depression during the intervention period.

However, it is not significant for the subjective

burden of the family. The linear regression model

revealed that family members of people suffering

from schizophrenia for more than ten years showed

the greatest increase while attending the

psychoeducation group. Psychoeducation was a

valuable nonstigmatization intervention and

empowered family members with mental disorders

(Palli A, et al, 2015). Another intervention that can be

done in reducing the care burden is Clinician

Supported Problem Solving Bibliotherapy (CSPSB).

In this study, pre and post interventions were

measured at months 1, 6 and 12 in either CSPSB or

UOFS interventions (regular outpatient support). An

intention-to-treat analysis is applied. The CSPSB

group had significant improvements in family burden,

experience of care, and decreased severity of

psychotic symptoms and re-hospitalization

frequency, compared to UOFS groups at months 6

and 12 (Wai Tong Chien, David R. Thompson and I.

Lubman Terence V. McCann , 2016).

In other studies using empowerment interventions

with counseling and psycho-education. The results of

the study found that the majority of respondents using

coping focused on problems to deal with aggressive

behavior of patients. Most caregivers act by taking

medication and talking about aggressive behavioral

triggers to the patient calmly, lovingly and letting the

patient alone. Nursing orders should focus on

counseling and psycho-education to empower

caregivers to utilize strategies to reduce the

aggressive behavior of patients and ways to deal

effectively with situations (Abin Varghese A., et

al.2015).

There is also an empowerment intervention in the

form of a family peer education program for mental

disorders conducted in Japan. Group interviews were

conducted with 27 facilitators from seven program

Caregiver Burden, Quality of Life and Empowerment Intervention in Caregiver Family with Schizoprenia

549

locations about their experiences before, during, and

after becoming facilitators. Data are categorized into

five stages of parenting: (1) attracting and

suppressing negative experiences. (2) find comfort by

listening to negative experiences; (3) supporting

participants as facilitators; (4) understanding and

affirming through experience sharing and (5)

discovering social values and roles in one's

experience. The third, fourth and fifth phases are

experienced by the facilitator. The value provided by

the facilitator on their parenting experiences changes

from negative to positive (Kageyama M., et al.,

2015).

4 DISCUSSION

Various problems arise and are felt by caregivers

family who care for their own family members with

mental disorders and some other pathological

conditions. The burden of nurturing, stress,

psychological well-being and quality of life of

caregiver and patient is a frequent problem. Levels of

burden, stress, psychological wellbeing and quality of

life show varying results for each study as well as the

factors that influence it. In the process of seeking help

and care for patients with mental illness, family

members or caregivers often bear economic and

material burdens. They also experience psychosocial

burdens, where stigma is one of the most challenging

psychosocial burdens faced by family members or

caregivers of people with mental illness.

Factors found in some studies that may affect

parenting burden are 3 factors, ie factors derived from

patients, environmental factors and factors of

caregiver. Factors from patients can be concluded,

among others, disability factors, frequency of

schizophrenia relapse or duration of disease, and

psychopathology or severity of schizophrenia

symptoms. This is certainly related to the severity of

caregiving activities that must be done by the

caregiver. The more severe the symptoms of

schizophrenia that arise, the more severe parenting

activities that must be done. Likewise, the more

severe the defect in schizophrenia, then the task of

parenting is also increasingly complex, especially if

people with schizophrenia often relapse (Arun R.,

2018). While the environmental factors that may

affect social and socio-economic support, the stronger

the social and economic support available, the lighter

the nurturing task (Aarti Jagannathan, et al, 2014).

The factors of caregiver are age, sex, education level,

occupation, depression level, anxiety and stress.

Caregivers with higher levels of depression, anxiety

and stress are reported to have higher parenting

burden and lower QoL. And in male caregivers it has

a light parenting burden and a better quality of life

than female caregivers (Yaw Nyarko Opoku-

Boateng, 2017).

Caring and quality of life is a risk factor or a

protection factor. This is in addition to factors from

patients, the environment and caregiver itself, also

depends on the intent and purpose of each caregiver.

Whether caregiver carries out parenting because of

compassion or merely a form of responsibility. If it is

a form of responsibility, then the care of the

schizophrenic becomes more severe than the feeling

of affection. In addition, social support is needed by

caregiver in carrying out their parenting activities.

Therefore, many studies are trying to provide

intervention in empowering caregiver to reduce the

burden of care, improve the quality of life of patients

and caregivers, and improve psychological well-

being. Several empowerment interventions were

undertaken in several studies including Clinician

Supported Problem Solving Bibliotherapy (CSPSB),

community based MAANASI project,

psychoeducation intervention, empowerment with

counseling and psychoeducation, intervention by

providing booklet for six weeks with face-to-face

discussions, and peer program group education.

Caregiver empowerment interventions are able to

reduce the burden of caregiver, improve the quality of

life, reduce stigma, improve psychological well-

being, and increase cohesion in the family.

5 CONCLUSION

The findings of some of these studies will encourage

mental health care professionals to be actively

involved in the prevention of mental illness and the

promotion of mental health through the assessment of

stress felt by mentally ill sitters to help them become

resilient and use more constructive treatment. strategy

in stressful situations.

The nurse's self-stigma can negatively affect the

patient's search, compliance, and rehabilitation

processes, programs that improve coping strategies

by strengthening self-esteem and empowerment by

health care providers and forming family support

groups can help to overcome self-stigma. between

caregivers of people with mental illness.

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