Burden of Care: A

Concept Analysis
Presented by:
HAZEL T. UTUTALUM
PhD Nursing
University of the Philippines,
Manila

I. INTRODUCTION
Burden of Care is a common problem that besets
primarily the care givers of patients with long term
or chronic disorders. In this concept, patients may or
may not experience the same burden. Patients with
schizophrenia experiencing hallucinations, delusions
and other positive symptoms of schizophrenia are not
in contact reality, thus, may not experience the
burden of care among their care givers. As with other
forms of long-term conditions, schizophrenia is more
enduring to the patients, the family members and
their significant others who are the care providers
throughout the course of the illness; from the hospital
to the community---through its revolving door.

Burden of Care- A concept analysis

Aside

from the identified factors in most

researches on burden of care, this paper takes
into account the most unfavourable and
conflicting situations interplaying with the
burden of care.
The recent (2013) Zamboanga seige increased
the burden of care among families and patients
with chronic schizophrenia. Cultural attributes
resulted to isolation and contributed to the
displacement of these patients and their
families.
The situation of mothers of these patients
revealed a great impact on the burden of care.

 Severe

mental illnesses have far-reaching

consequences for both patients and their
relatives.
The consequences of care apply to carers'
social and leisure activities, financial status,
health condition. The burden of care has three
fundamental causes: the reorganisation of
mental health services, a social isolation of
patients and their families and the lack of
systemic support for caregivers. The problem
of caregiving consequences has been
investigated in several studies. (CiakowskaKumiska M1, Kiejna A, Psychiatr Pol. 2010
Jul-Aug)

II. Aims/Purpose
1.

To understand the factors contributing to burden of

care in patients with chronic schizophrenia and
mediate the caregiver's perception of burden of
care.

2.

It intends to identify the consequences of burden of

care to the patient, to the care- giver and the family.

3.

To investigate current literature on Burden of Care

and its impact on the quality of life in patients with
chronic schizophrenia.

Methods
Literature

for this concept analysis was

obtained by computerized searches of PubMed
for the years 19992010. Additional sources
were obtained after reviewing the
bibliographies of the literature identified by the
initial search. The Avant and Walker method of
concept analysis provided the framework for
the analysis.

Key Terms
Burden

of care
Care-giver
Chronic Schizophrenia
Family
Quality of Life

III. Definition and Origin

Burden of Care
Burden of care is a complex construct that
challenges simple definition, and is frequently
criticized for being broad and generally
negative. Frequently, burden of care is more
defined by its impacts and consequences on
caregivers.
The burden of responsibility is something that is
oppressive, exacting, a heavy load, difficult to
bear. (Collins, English Dictionary,2000.).

Burden of Care in Schizophrenia

Schizophrenia

is a disabling, chronic psychiatric

disorder that poses numerous challenges in its
management and consequences. It extols a
significant cost to the patient in terms of
personal suffering, on the caregiver as a result
of the shift of burden of care from hospital to
families, and on society at large in terms of
significant direct and indirect costs that include
frequent hospitalizations and the need for longterm psychosocial and economic support, as
well as life-time lost productivity. (PubMed,
2008)

The Consequences
Family caregivers of persons with schizophrenia
and other disorders experience high levels of
burden. Most studies of family burden in
schizophrenia have taken place in developed
countries.
Apply to carers' social and leisure activities,
financial status, health condition. The burden of
care has three fundamental causes: the
reorganisation of mental health services, a social
isolation of patients and their families and the lack
of systemic support for caregivers. The problem of
caregiving consequences has been investigated in
several studies. (Ciakowska-Kumiska M1, Kiejna
A, Psychiatr Pol. 2010 Jul-Aug)

On the family
Burden

on the family" - refers to the consequences for

those in close contact with a severely disturbed
psychiatric patient. (Treudley,1946)

Schizophrenia

is a chronic psychiatric disorder, and its

effects can be classified at three levels:
1. The patient who undergoes personal suffering
2. The caregiver and/families for the burden of care
along with the added responsibility of transitioning the
relative from inpatient to the outpatient treatment
3. The society as a whole for suffering from frequent
hospitalizations and long-term financial and
psychosocial support. [Awad AG, Voruganti
LN,Pharmacoeconomics. 2008; [PubMed] [Ref list]

 The

care givers of schizophrenia patients

are likely to face increasing levels of burden
and stress. Burden of care does not only
include the subjective dimension comprising
of impact and consequences on the mental
health of the caregivers, but also the
objective dimension which includes dealing
with patients symptoms and behavior, and
changes in the household routine and family
relations. (Reine G, Lancon C, Simeoni MC,
Duplan S, Auquier P Encephale. 2003 MarApr; 29(2):137-47. [PubMed]

Burden of Care- Attributes

Objective burden of care is meant to indicate
its effects on the household such as taking care
of daily tasks, whereas
Subjective burden indicates the extent to
which the caregivers perceive the burden of
care.

Antecedents
In

addition to the emotional, psychological,

physical and economic impact, the concept of
'burden of care' involves subtle but distressing
notions such as shame, embarrassment,
feelings of guilt and self-blame.

Review of Literature

Several studies examined the role of gender, and

reported that relatives of male patients with
schizophrenia frequently experience more social
dysfunction and disabilities than those of female
patients. Similarly, a number of other studies
documented the contribution of ethnicity and cultural
issues to subjective burden of care. Although there is
no complete agreement on whether a specific cluster
of psychotic symptoms has the most impact on a
caregiver's burden of care, there is agreement that
the severity of symptoms increases it. (Awad AG1,
Voruganti, LN)

A Model Case
Webster, 40, is afflicted with schizophrenia for
21 years. He is cared by his 75 year- old,
widowed mother. The family survives by
peddling soya bean curd. Webster used to do
this in times of his remissions.
During his acute days, Websters 2 sisters do
the peddling, otherwise, it leaves the family
with nothing to eat. His mother stays with him
throughout his hospitalization. They depend on
hospital food supply and medication; from
hospital stocks, donated by NGOs and students,
if ever there is any.

A Contrary Case
Josie, 19, is a case of Bipolar disorder diagnosed for a year. He graduated a 2- year course Hotel and
Restaurant Management with a series of behavioral problems . After the break up with her recent
boyfriend, her relapse has caused the familys financial difficulty because Josie has to be admitted.
Josie refused anti-psychotic medications, claiming her younger sister gives her the poison because
she has a relationship with her ex-boyfriend. She claims that her sister uses her clothes, make-up ,
shoes, and everything she owns, but she claims she can not used my face, thats why she wants
me to die!
Josies parents are government employees . Her father worries about his frequent out of the office
during office hours but his co-workers always understand his situation, because he is open about it.
In fact, his co-workers offers him loan when he gets short of money to buy for Josie s needs.
Josies mother works as a guidance counsellor in a local high school. She claims she gets embarrass
sometimes when she does counselling during child-parent consultation for the students. She feel
guilty about it. She plans to seek a transfer from the position.
Josies older brother, Ram, works as clerk in a private office and is married to a nurse who helps him
understand the course of Josies illness and is participates actively during Josies hospitalization. In
fact, Josie opt for her sister-in-law than her sister to assist her in her needs if her mother is not
available. But Ram is concerned about Josies dependency on his wife, Josie is unpredictable than
the weather!

A Borderline Case
Anwar , 25, has a divorced parents when he was in kindergarten. His parents separated because of
religious difference. After the separation, he and his Muslim mother was survived by his retired
grandparents. Anwar has chronic asthma since childhood which he acquired from his mother.
Anwar was overly protected by his mother. She claims that he can not be exposed because
anything can trigger his asthma. She dictates everything on Anwar in which he is very compliant.:
his dressing, the kind of play, his sleeping position, sleeping time. And this went on until he is in the
grade school.
At puberty, Anwar asks his mother to see his ailing father, but she did not permit him. Although, he
repeatedly asked her, she declined to all his requests. Anwar was tolerant to all these for almost
five years. In fact, he was timid, rarely talk and very guarded in his moves. He was a respectful
young guy.
At, 20, Anwars grandmother noted a change in his behavior, he suddenly rushed inside the room
asking for food, money, like a young kid, with a loud voice. He laughed and murmured to himself
and suddenly shuns himself into a room and refused to take his bath. His mother refused to
acknowledge all these. When Anwar broke his leg from a tree after hallucinating that he can fly. His
mother brought him to a folk healer, and claims that the folk healer told her they need to comply
with rituals which has been from family generations.
Anwar had a psychiatric consultation sought by his grandmother after a quarrel with her mother,
after his first suicide attempt. Chlorpromazine was prescribed and Biperidine HCl to control his
extra pyramidal symptoms. Anwars mother continued with her rituals. Consequently, Anwars
compliance to his treatment was compromised, his mother told him that all that he sees are part of
the curse from the forefathers.
At 25, Anwar committed suicide by hanging himself in their own house.

Burden of Care- COMPONENTS

Grad

and Sainsbury (1963)

Hoenig and Hamilton (1966)
---- developed the first burden scales for caregivers
of severely mentally ill patients.

Empirical Referents

Grad and Sainsbury (1963) and Hoenig and Hamilton (1966)

developed the first burden scales for caregivers of severely mentally ill
patients.

Pasamanick , et.al.,(1967) proposed questionnaires for burden

evaluation in relatives of schizophrenic patients. Relatives may be
included in specific psychoeducational programs, but few of these
programs have been evaluated in terms of caregiver burden.

Platt et al. (1983) tried to distinguish between the occurrence of a

problem, its alleged aetiology, and the perceived distress, when
developing the SBAS questionnaire. These authors also proposed
separate evaluations of behavioral disturbance and social performance
by relatives, and a report of extra-disease stressors in family life. The
SBAS is actually the most complete, but also complex instrument for
evaluating burden in caregivers.

Baronet AM. conducted studies that evaluated burden of

care for a mentally ill relative using measurement
instruments with established validity and reliability. A
review by identifies aspects of caregiving that are most
burdensome to caregivers. It describes the nature of the
relationships between variables and different dimensions
of caregiver burden, and identifies mixed findings that are
theoretically relevant to caregiver burden.
The review discusses research findings in light of the
methodological issues and research designs
characterizing the literature, and briefly summarizes the
effects of burden on the caregiver's life. Finally, it
identifies advances made in this line of research in recent
years and highlights areas that need further attention in
future research work. Summary tables are included.

Data about instruments measuring caregiver

burden in relatives of schizophrenic patients
were available measuring the purpose,
content and psychometric properties:
Perceived Family Burden Scale (PFBS) the
Involvement Evaluation Questionnaire (IEQ)
and the Experience of Caregiving Inventory
(ECI). In past studies, researchers more or
less agreed about the dimensions that
comprise the family burden.

.
[Caregiving

consequences in mental disorders--definitions and instruments of

assessment].
[Article in Polish]
Ciakowska-Kumiska M1, Kiejna A.
Author information
Abstract
Severe mental illnesses have far-reaching consequences for both patients and their
relatives. This paper reviews literature on the measures of caregiving consequences.
Authors provide a condensed knowledge and research results in the area of caregiving
consequences, especially both subjective and objective caregivers' burden. The
consequences of care apply to carers' social and leisure activities, financial status,
health condition. The burden of care has three fundamental causes: the reorganisation
of mental health services, a social isolation of patients and their families and the lack of
systemic support for caregivers. The problem of caregiving consequences has been
investigated in several studies. In order to identify factors, which have impact on
caregiver distress, a variety instruments have been developed. This paper focuses on
questionnaires useful for the systematic assessment of both objective and subjective
burden: Involvement Evaluation Questionnaire (IEQ), Perceived Family Burden Scale
(PFBS), Zarit Caregiver Burden Scale (ZCBS), Experience of Caregiving Inventory (ECI),
Family Problems Questionnaire (FPQ). The mentioned instruments proved to be a
reliable instrument for measuring caregiver consequences in mental healthcare.
PMID: 20919503 [PubMed - indexed for MEDLINE]

Links from PubMed

References

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Caqueo-Urzar A, Gutirrez-Maldonado J.
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Reine G, Lancon C, Simeoni MC, Duplan S, Auquier P.
Encephale. 2003 Mar-Apr;29(2):137-47. Review.
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Awad AG, Voruganti LN.
Pharmacoeconomics. 2008;26(2):149-62. Review.
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Ciakowska-Kumiska M, Kiejna A.
Psychiatr Pol. 2010 Jul-Aug;44(4):519-27. Review.
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Nguyen M.
Medsurg Nurs. 2009 May-Jun;18(3):147-51; quiz 152. Review.
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Baronet AM.
Clin Psychol Rev. 1999 Nov;19(7):819-41. Review.
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Canam C, Acorn S.
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