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The concept of burden on family members of psychiatric patients continues
to challenge investigators because of various conceptual, measurement and
methodological difficulties (Fallon et al 1984). Burden as a research
construct is examined in diverse samples and conceptualized in several
ways (Stephen and Kinney, 1989). Trendley (1946) first used the term
burden on the family and referred to it as the consequence for those who
are in close contact with a psychiatric patient. Brown (1967) considered
it as the impact of living with a patient on the way of life and health of
family members. Platt (1985) defined burden as “the presence of problems,
difficulties or adverse events which affect the life (lives) of a
psychiatric patient’s significant others, e.g., members of the household
and/or the family”. Jenkins and Schumacher (1999) defined it as
“behavioral difficulties, social disruption, and adverse effects of
illness on family (or significant others)”.
Schizophrenia is a chronic and disabling condition which produces
considerable burden in the caregivers. Early researches on family burden
included the work of Grad and Sainsburry (1968) and Pasamanick et al
(1967) who studied in-patient hospital treatment versus out-patient home
care of mentally ill patients. Hoenig and Hamilton (1969) observed that
the family burden in widely reported by the care givers of schizophrenic
patients. Pai and Kapur (1981) found positive correlation in social
dysfunction, psychopathology and burden in the families of schizophrenic
patients. Nizhawan et al (1985) observed that the families of
schizophrenic patients chiefly perceived burden in the areas of family
routine, family interactions and health of family members.
The relationship between family burden and socio-demographic
characteristics of the patients such as age, education, gender, ethnicity
and social class have also been investigated. Biegel and Milligan (1992)
suggested that there were little convincing evidence to support the
relationship between socio-demographic characteristics of the patients and
burden on family members.
Martyns-Yellowe (1992) found that rural families of the schizophrenic
patients experienced significantly more financial burden than urban
families. Mors et al (1992) reported that the stress level was higher
among family members of the male patients.
In married patients the primary care is usually provided by the spouses.
Fadden et al (1987) interviewed spouses of depressive patients and found
restrictions in social and leisure activities, a fall in family income and
a considerable strain on marital relationship. Kumar et al (2002) observed
significantly greater burden in female spouses of schizophrenic patients
living in nuclear family set up.
Burden of care is associated with less optimal clinical and psychosocial
outcome in schizophrenia (Fallon & Pedersen, 1985; Perlick et al 1992).
Family burden has high correlation with ‘expressed emotion’ (Scazufca and
Kuipers, 1996), a critical variable that is linked with patients’ course
of illness (Butzlaff and Hooley, 1988). Therefore it becomes imperative to
delineate various dimensions of burden in the families of psychiatric
patients for planning effective psychosocial management and
rehabilitation.
A host of variables cobntribute to the emotional states and burden in
spouses of psychiatric patients. This can schematically be represented as
under
AIM:
The index study aims at delineating determinants of emotional states and
burden in spouses of chronic schizophrenic patients.
Variables:
The identified variables for investigation are as follows:
Independent Variables:
1.
Patient Related:
a.
Psychosocial Dysfunction
b.
Duration of Illness
2.
Spouse Related:
a.
Defense Mechanisms
b.
Coping Mechanisms
c.
Personality
d.
Gender
3.
Environment Related:
a.
Family Type
b.
Domicile
Dependent Variables:
1.
Emotional States
2.
Spousal Burden
METHOD
Sample:
A sample of at least 120 spouses of chronic schizophrenic patients shall
be drawn from Institute of Mental Health and Hospital, Agra. It shall be
ensured that equal numbers of participants in following categories are
included: either gender, nuclear and joint family, rural and urban
domicile. Following inclusion/exclusion criteria shall be adopted:
a.
Age range 21-55 years
b.
Minimum two years duration of exposure to schizophrenic illness
c.
No history of substance abuse or major medical illness in either
spouse
d.
Co-operative and consenting spouses
e.
Diagnosis of chronic schizophrenia as per ICD-10 Diagnostic Criteria
Tools:
1.
Personal Data Sheet:
For recording identifying information of patients and spouses and
pertinent clinical information regarding participants
2.
Dysfunctional Analysis Questionnaire (DAQ):
The questionnaire is a measure of dysfunction in the patients. It is
developed by Pershad et al (1985). DAQ assesses dysfunction in five areas
– Social, Vocational, Personal, Family and Cognitive. There are ten items
in each area rated on five points. The maximum score in each area is 50.
It can be administered on patient or any one living with the patient. The
re-test reliability ranges from .76-.92. The validity with external
criteria ranges from .28-.65.
3.
Defense Mechanism Inventory (DMI):
The inventory is developed by Mrinal and Mrinal (1984). Separate versions
are available for Male and Female participants. It assesses five clusters
of defense mechanisms: Turning against objects (TAO), Projection (PRO),
Principalization (PRN), Turning against self (TAS), and Reversal (REV).
Each version contains 10 stories. Subject is asked to respond to four
questions corresponding to four types of behaviour evoked by the situation
described in story: (a) proposed actual behaviour (b) impulsive behaviour
(c) thoughts (d) feelings. Five responses are provided for each question,
each responses representing one of the five clusters of defense mechanism.
The scoring is done through templates. The retest reliability ranges from
.80-.92. The construct validity and
inter-relationships are satisfactory.
4.
Coping Checklist (CC):
It is developed by Rao et al. (1989). The checklist consists of 70 items
in seven subscales categorized in three domains: problem focused, emotion
focused and; problem and emotion focused. The retest reliability is .74.
It has been validated in a community sample.
5.
Eight State Questionnaire (8SQ) [IPAT, 1975]:
The questionnaire measures eight emotional states: (a) anxiety (b) stress
(c) Depression (d) Regression (e) Fatigue (f) Guilt (g) Extraversion (h)
Arousal. There are 96 items, 12 for each emotional states. Each item has
four options and is scored either 0,1,2, or 3. The retest reliability
ranges from .91-.96. The ranges of validities are .48-.92.
6.
Burden Assessment Schedule (BAS):
The schedule is developed by Thara et al (1998). It measures burden in
nine areas: (a) Spouse related (b) Physical and mental health (c) external
support (d) caregiver’s routine (e) support of patient (f) taking
responsibility (g) other relations (h) patients’ behaviour (i) caregivers’
strategy. There are 40 items rated on three point scale. The reliability
is .80. The validity ranges from .71-.80.
Procedure:
The spouses of prospective participants shall be approached. Rapport shall
be established. They will be briefed about the study and its relevance.
Consent will be obtained. The above tools shall be administered
individually after ascertaining inclusion criteria.
Statistical Analysis:
The data shall be processed through Statistical Package for Social
Sciences (SPSS) for computation of multiple regression and other
appropriate statistics.
Results and Discussion
The obtained results shall be described and discussed in the light of
existing literature and observations.
Implications:
The results shall be useful in enhancing understanding of various
determinants of emotional states and burden in spouses of chronic
schizophrenic patients which shall directly contribute to family therapy
particularly burden management.
REFERENCES
•
Biegel, D. and Milligan, S. (1992)
The role of race in family care giving with persons with mental
illness: Burden, support systems and the use of self-help.
Cleveland,
OH:
Mandel
School
of Applied Sciences.
•
Brown, G.W. (1967)
The family of the schizophrenic patient. In A.J.Copen and A. Walk (Eds)
Recent Development in Schizophrenia.
London:
royal Medico Psychological Association.
•
Butzlaff, R.L. and Hooley, J.M. (1988)
Expressed emotion and psychiatric relapse: A meta-analysis. Archives of
General Psychiatry, 55, 547-552.
•
Fallon, I.R.H. & Pedersen, J.(1985).
Family management and prevention of morbidity in schizophrenia: The
adjustment of the family unit. British Journal of Psychiatry, 147,
156-163.
•
Fadden, G., Bebbington, P., & Kuipers, L.
(1987).
Caring and its burden: A study of spouses of depressed patients.
British Journal of Psychiatry, 151, 660-667.
•
Grad,J. and Sainsburry, P. (1968)
The effects that patients have on their families in community care.
British Journal of Psychiatry, 114, 265-278.
•
Hoening, G., & Hamilton, M.W.
(1969).
The de-segregation of the mentally ill.
London:Routledge
and Kegan Paul.
•
IPAT (1975)
Eight state questionnaire.
Illinois:
Institute
of
Personality
and Ability Testing.
•
Jenkins, J.H. & Schumacher, J.G.
(1999)
Family burden of schizophrenia and depressive illness: Specifying the
effects of ethnicity, gender and social ecology. British Journal of
Psychiatry, 174, 31-38.
•
Kumar, S., Mohanty, S., Kumar, R., Kumar, A.
(2002).
Gender differences in perceived burden of care among spouses of depressive
patients. Eastern Journal of Psychiatry, 5, 26-28.
•
Martyns-Yellowe, I.S. (1992)
The burden of schizophrenia on the family: A study from
Nigeria.
British Journal of Psychiatry, 161, 779-782.
•
Mrinal, N.R. and Mrinal, U. (1984)
Defense Mechanism Inventory.
Agra:
National Psychological Corporation.
•
Mors, O., Sorenson, L.V., and Therkildsen, M.L. (1992)
Distress in the relatives of psychiatric patients admitted for the first
time. Acta Psychiatrica Scandinavica, 85, 337-344.
•
Nijhawan, M., Gautam, S. & Gehlot, P.S.
(1985)
Who is more burden on the family? Schizophrenic and chronic illness.
Indian Journal of Social Psychiatry, 7, 202-210
•
Pai, S. and Kapur, R.L. (1981)
The burden on the family of a psychiatric patient: Development of an
interveiw schedule. British Journal of Psychiatry, 138, 331-335.
•
Pasamanick, B., Scarbetti, F., and Dinitz, S. (1967)
Schizophrenia in the community: An experimental study in the prevention
of re-hospitalization. New York: Appleton-Century-Crofts.
•
Perlick, D., Stastny, P., Mattis, S. et al.
(1992)
Contributions of family, cognitive and clinical dimensions of long term
outcome in schizophrenia. Schizophrenia Research, 6, 267-265.
•
Perlick, D., Clarkin, J.F., Sirey, J. et al.
(1999).
Burden experienced by caregivers of persons with bipolar affective
disorder. British Journal of Psychiatry, 175, 56-62.
•
Pershad, D., Verma, S.K., Malhotra, A. and Malhotra, S. (1985)
Dysfunction Analysis Questionnaire.
Agra:
National Psychological Corporation
•
Platt, S. (1985)
Measuring the burden of psychiatric illness of the family: An evaluation
of some rating scales. Psychological Medicine, 15, 383-393.
•
Rao, K. Subbakrishna, D.K. and Prabhu, G.G. (1989)
Development of a Coping Checklist. Indian Journal of Psychiatry, 31,
128-133.
•
Scazufca,M. & Kuipers, E.
(1996).
Links between expressed emotion and burden of care in relatives of
patients with schizophrenia. British Journal of Psychiatry, 168,
580-587.
•
Stephens, M.A.P. and Kinney, J (1989)
Caregiving stress instrument: Assessment of content and measurement
quality. Gerontology Review, 2, 4-54
•
Thara,R., Padmavati, R., Kumar, S., & Srinivasan, L.
(1998)
Burden Assessment Schedule. Indian Journal of Psychiatry, 40, 21-29
•
Trendley, M.B. (1946)
Mental Illness and family routines. Mental Hygiene, 15, 407-418. |