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Factors related to staff
stress in HIV/AIDS related palliative care
Chandra Prabha S, Jairam KR, Jacob Anila
Department of Psychiatry, NIMHANS, Bangalore, India
http://www.jpalliativecare.com/article.asp?issn=0973-1075;year=2004;volume=10;issue=2;spage=48;epage=54;aulast=Chandra
Correspondence Address:
Chandra Prabha S
National Institute of Mental Health and Neuro Sciences,
Bangalore - 560 029
India
prabhachandra@rediffmail.com
AIMS: Staff stress in HIV related palliative care has been
identified as an important problem worldwide. This study aimed
at estimating prevalence of staff stress and its correlates in a
sample of palliative caregivers in HIV/AIDS in India.
MATERIALS AND METHODS: Fifty-two participants (29 female and
23 male) completed the Maslach Burnout Inventory (MBI), AIDS
Contact Scale (ACS) and AIDS Stress Scale (ASS) and a
semi-structured questionnaire. RESULTS: The majority (92%) had
average to high scores on at least one domain of MBI. High
scores on the factors Emotional Exhaustion, Depersonalisation,
and Personal Accomplishment were seen in 10%, 17% and 58% of the
sample respectively. ASS score, severity of stress in dealing
with persons living with AIDS and having considered leaving HIV
related work were predictors of high Emotional Exhaustion
scores. ASS score, ACS score and severity of stress with death
of a person with AIDS were predictors of high Depersonalisation
scores. Female gender was a predictor of a high Personal
Accomplishment score.
CONCLUSIONS: The study emphasises the need to address issues
related to staff burnout in HIV palliative care.
Keywords: HIV, palliative care, staff stress
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How to cite this article:
Chandra PS, Jairam KR, Jacob A. Factors related to staff
stress in HIV/AIDS related palliative care. Indian J
Palliat Care 2004;10:48-54 |
|
How to cite this URL:
Chandra PS, Jairam KR, Jacob A. Factors related to staff
stress in HIV/AIDS related palliative care. Indian J
Palliat Care [serial online] 2004 [cited 2006 Dec
29];10:48-54. Available from: http://www.jpalliativecare.com/article.asp?issn=0973-1075;year=2004;volume=10;issue=2;spage=48;epage=54;aulast=Chandra |
Introduction
Palliative care in India involves mainly those affected by
cancer and more recently HIV/AIDS. In the current Indian setting
where HIV/AIDS is associated with extreme social stigma,
patients will continue to reach health care facilities late for
aggressive treatment of the illness. Even though there is a
gradual decrease in new HIV infections in India, the epidemic is
still spreading. The number of new infections in 2001 has been
estimated to be 0.11 million.[1] With an
expected rise in HIV prevalence to epidemic proportions in
India, and the high cost of anti retroviral therapy, the number
of people infected with HIV requiring palliative care will rise
exponentially and draw on health care resources both in terms of
infrastructure and personnel.
Hence, it is of utmost importance to utilize the resources
available in palliative care by ensuring efficient functioning
of the available palliative caregivers, alongside training of
new hands. As in any care giving profession, in palliative care
too, the psychological well being of the caregivers plays a
major role in improving quality of care. This may be important
as 'exhaustion syndrome' is a potential risk for palliative care
workers and families because of their special contact with
suffering.[2] Burnout has been reported to be
associated with sub optimal patient care practices.[3]
It is therefore important to identify prevalence of stress and
burnout among carers and identify factors that contribute to
this stress in the palliative care settings and design suitable
intervention programmes for those under stress.
Most of the early literature on stress experienced by staff
caring for dying focused on nurses' experiences.[4]
As research data on staff stress accumulated, other theoretical
frameworks or models came to be discussed. The studies done vary
in terms of the sample size and character and the tools used.
McKusick & Horstman[5] studied the
psychological experience of professionals working in AIDS. They
found that respondents experienced more depression, anxiety,
overwork and fear of death since starting to work with AIDS.
While the number of years of working with AIDS did not correlate
with psychological distress, the percentage of total work time
spent in AIDS unit was related to depression, and they suggested
that burnout is a function of the amount of concentrated
exposure rather than of longitudinal contact with the disease.
Ross & Seeger[6] found that 34% of health
professionals reported stress and 43% reported overwork in their
work with AIDS. The major stressors were youth of the people
with AIDS, neurological aspects of the illness and death. Stress
had the highest correlation for burnout, followed by needing
more information about emotional needs of people with AIDS.
Maj[7] highlighted the lack of data on the
prevalence of the burnout syndrome in AIDS caregivers. One of
the major limitations of the evidence available then was that it
had been obtained exclusively in developed countries.
In her review of literature on impact of working with people
with HIV/AIDS, Barbour[8] postulated that stress in staff
members may differ depending on their training, previous
experience, personality, sexual identity and reason for working
in the field.
Kleiber et al[9] attempted to identify and
characterize burnout in AIDS caregivers by comparing health
workers in AIDS and non-AIDS fields. They found no effect of
occupational group (medical vs psychosocial) on burnout, however
those in AIDS health care were less burnt out than workers in
cancer care or geriatrics. In contrast to Kleiber's results,
Catalan[10] found that a majority of AIDS workers
had some degree of stress detected by high scores on at least
one MBI subscale. In their sample, AIDS workers were found to be
five times more likely than oncology workers to score high on
MBI with doctors scoring higher on depersonalization than
nurses.
More recently Hayter[11] studied burnout in HIV care nurses
and found that 66% had moderate or high burnout on EE or PA of
the MBI. Sherman[12] carried out a qualitative study among
nurses working with AIDS patients and found that most nurses
coped with physical and emotional risks and stress of AIDS
caregiving by problem focused and emotion-focused coping.
Understanding the evolution of staff stress is important in
preventing and treating the same. One of the popular models used
to study staff stress is the person - environment model,
which suggests that job satisfaction and occupational stress are
the result of a dynamic interaction between the person holding a
particular job and the environment in which he or she is
employed.
Most researchers have focused on identifying the correlates
based on coping and support alongside demographic and work
related variables. Attempting to identify predictors of
retention among HIV health care professionals, Brown et al[13]
studied health professionals in hemophilia treatment centers.
The burnout as measured by MBI was found to be low, but over a
four-year period, more than one third left their jobs. Less
perceived stress with colleagues and being married were
significant predictors of job retention. The various other
factors described as related to stress and burnout include: age,[14],[15],[4],[16],[17]
communication, role ambiguity, team problems,[4],[18],[19]
poor adjustment related to work, social relations and
leisure,[10],[20] and staff support.[18],[4]
The palliative care field in India is fraught with problems of
developing nations- limited access to palliative care,
illiteracy, poverty, poor status of women, stigma against the
disease and lack of an organized social security system.[21]
To our knowledge there has been no study to date on staff stress
in palliative care in India. Even though there have been
numerous studies from the West, the distinct features of
palliative care in India makes it difficult to draw conclusions
in our context based on these studies.
The current study was designed to identify the prevalence of
stress among staff working in HIV related palliative care and to
identify its correlates.
Materials and Methods
Semi structured questionnaires were given to 52 staff members in
four palliative care centres in Bangalore, and also to staff
offering palliative care for the HIV infected in hospitals. The
questionnaire (available from the author on request) comprised
of items designed to assess (1) the clinical background, (2)
their socio-demographic information and (3) issues related to
work. The work related section of the questionnaire had items
that assessed the following:
- Degree of satisfaction with patients,
families, colleagues, institutional administration, society,
including media and government
- Degree of satisfaction with
opportunities for case supervision/ guidance, case
discussion with peers and opportunities to improve knowledge
and skills
- Degree of stress perceived dealing
with various aspects of HIV/AIDS including stage of disease,
age of patients, psychosocial and ethical issues
The following structured tools were also used:
AIDS Contact Scale[22] (ACS)
The ACS is a 15 item self administered questionnaire concerning
the number of AIDS patients seen, time spent with AIDS patients,
the number of contacts with family and friends of patients and
the frequency of a variety of specific physical contacts
(touching, handling bedclothes, handling blood and other fluids
and handling equipment contaminated by such fluids) and social
contact (general conversation with patients, discussion of
physical and emotional problems related to the disease). Each
item is scored from 1 to 4, the total score being the mean of
the item scores, with higher scores indicating a higher degree
of contact with persons with AIDS. The scale has been seen to
have internal consistency ( = 0.83).
AIDS Stress Scale[23](ASS)
The ASS is an 8 item scale that was developed to assess the
challenges posed to health care workers as a result of working
with AIDS and persons with AIDS. Using a 4-point Liekert type
scale, respondents indicate their degree of comfort with AIDS
patients and with friends and family of persons with AIDS as
well as the degree of risk they perceive as a result of their
jobs. There are 5 yes-no questions assessing stress
related to working with patients with AIDS, whether they feel
their knowledge is sufficient to deal with physical and
emotional needs of AIDS patients and with the family and friends
of AIDS patients. Each item is scored from 1 to 4 and the score
for the scale is obtained by the mean of the item scores. The
mean score is an indicator of AIDS stress, with higher scores
indicating more stress. The reliability of the scale has been
demonstrated with a Cronbach's = 0.668.
Maslach Burnout Inventory[24] (MBI)
The MBI is a 22 item scale that is recognized as a valid measure
of burnout. The inventory is comprised of 3 subscales that
assess 3 aspects of burnout, namely Emotional Exhaustion (EE),
Depersonalization (DP) and Personal Accomplishment (PA). Higher
scores on EE and DP indicate higher levels of burnout and higher
scores on PA indicate lower levels of burnout. In addition to
the raw scores, cutoffs have been suggested to classify the
score as falling into low, average and high levels of burnout.
Scores less than 19 on EE, 6 on DP and more than 39 on PA
suggest low level of burnout. Scores of 19-26 on EE, 6-9 on DP
and 34-39 on PA suggest average level of burnout. High level of
burnout is indicated by a score more than 26 on EE, 9 on DP and
less than 34 on PA.
Data Analysis
Data was entered into SPSS 7.5 for analysis purpose. An initial
descriptive analysis was carried out to determine the sample
characteristics. t tests, ANOVA and Pearson's bivariate
correlation were carried out to determine correlates of burnout.
The analysis was carried out using the raw scores on the MBI
scales. For assessing prevalence of burnout, the cutoff
suggested[24] was used to categorize the scores as indicating
low, average or high level of burnout.
Results
The sample comprised of 52 subjects, 29 females and 23 males.
The mean age of the sample was 34.42 years (SD 9.64). Majority
of the sample were doctors (46%), followed by counsellors (17%),
nurses (14%), social workers (10%) and others (13%). 54% of the
subjects had post graduate education. Thirty three subjects were
married (64%) and 16 subjects (31%) had children. The majority
(48%) of the subjects had been working in the field of
palliative care for a period of 1-5 years. 64% of the
participants were working full time in palliative care. Most of
the participants started working in the field either as part of
work assigned to them (49%) or as an area of professional
interest (35%). Frequency of contact with HIV cases per week was
less than 5 cases in 41%, up to 10 cases in 31% and more than 10
cases in 29%. The majority (55%) worked more than 5 days a week
with HIV patients.
ASS (AIDS Stress Scale) Scores
The ASS scores ranged from 1.25 to 4.13 with a mean of 2.42
(0.73). Those who had children scored significantly lower (1.94
± 0.53) than those without (2.61 ± 0.72); P= 0.003
indicating lower degree of stress among those with children.
Prevalence of burnout
Over all, across the domains, 92% of the respondents were seen
to have average to high levels of burnout in at least one of the
3 domains. 66% of the 44 participants who responded to all the
items had high levels of burnout in at least one domain.
Emotional Exhaustion: The mean score in this domain was
13.60 (SD 10.71). 62% of the respondents (n=50) reported low
levels, 28% average and 10% high levels of burnout in this
domain.
Depersonalization: The mean score of the respondents in
this domain was 5.22 (SD 4.85). Of the total 46 participants who
responded to all the items in the domain, 61% had low level, 22%
had average level and 17% had high level of burnout in this
domain.
Personal Accomplishment: The mean score in this domain
was 31.12 (SD 8.28). 43 participants responded to all the items
in this domain. Of them, 58% had a high level of burnout, 28%
and 14% were seen to have average and low level of burnout
respectively.
Correlates of burnout
Emotional Exhaustion (EE): There was no association of
the scores in this domain with any of the socio-demographic
variables considered. There was significant positive correlation
between the ASS score and the EE scores (r = 0.418; P =
0.004). Those who reported using some strategy to deal with
their stress were seen to score significantly lower than those
who did not. Those who perceived higher severity of stress in
dealing with ethical issues in persons living with AIDS, stigma
attached to the work, and death of a young person with AIDS
scored higher on EE as well. Also, higher scores on EE were
associated with reporting having considered leaving AIDS related
palliative care work.
Depersonalization (DP): Those who did not have children
were seen to score significantly higher (6.19 ± 4.94) in this
domain compared to those with children (3 ± 3.96), (t
(44)=-2.129; P= 0.039). There was also a significant
positive correlation of DP scores with ASS scores (r = 0.541;
P = 0.015) and ACS scores (r = 0.381; P = 0.038).
Those who reported more severity of stress in dealing with death
of a person with AIDS and stigma attached to the work scored
significantly higher on DP as well. Those who had higher scores
on DP also reported having considered leaving palliative care
work more often.
Personal Accomplishment: There was a significant gender
difference in the scores on this domain with females scoring
higher (33.92 ± 8.11) than males (27.22 ± 7); P = 0.006
indicating a greater amount of burnout in this domain among
males. A significant association was found between PA score and
ASS score (r = -0.286, P = 0.037). Those who reported
that they took short breaks from work to deal with stress were
seen to have a significantly higher score (suggesting lower
levels of burnout) than those who did not.
A comparison of subjects in part time and full time work with
HIV palliative care did not reveal any significant differences
between the two groups. When professions were compared on
burnout scores, doctors showed less scores on all burnout
domains compared to nurses and social workers
To identify the predictors of the domains of MBI, regression
analysis was carried out with the variables found to be
significantly associated for each domain. ASS scores, as well as
degree of stress perceived with dealing with person living with
AIDS, not using some strategy to deal with stress and having
considered leaving HIV related work were found to be the
predictors for EE scores. For Depersonalization scores, scores
on the ASS and ACS and severity of stress related to death of a
person with AIDS were significant predictors. For PA, however
only gender was a significant predictor; being female predictive
of scoring high on PA.
Discussion
The findings of the current study that 92% of respondents had
average to high levels of burnout and that 66% had high burnout
in at least one domain are of some concern. This indicates that
high levels of burnout are present in palliative caregivers of
HIV/AIDS. Though we did not study a control group, the very fact
that a majority of the sample had burnout is significant. We did
not find any association of burnout with age, occupational role,
or duration of work in the field of palliative care as reported
in western studies.[4]
Our findings also indicate that reason for working in the field
was not significantly associated with MBI scores. We also did
not find any significant difference in the MBI scores between
different occupational groups though nurses scored the maximum
on all burnout measures. This suggests the possibility that
palliative care may mitigate the stress on any particular group
of professionals due to the team approach to care rather than
individual specialist approach followed generally in medicine.
However, nurses continue to be at risk for high levels of
stress.
Our finding that higher scores on ASS were predictive of
emotional exhaustion and depersonalization underline the
possibility that AIDS related work is inherently stressful. We
found that severity of stress in dealing with persons living
with AIDS (that would indicate a continued interaction with the
patient) was predictive of higher EE, and that severity of
stress in dealing with death of a person with AIDS (which would
indicate a loss of relationship for the caregiver) was
predictive of DP scores. Whether it is the inherent stress due
to AIDS care, as measured by ASS, that translates as higher
degree of burnout on the MBI requires further exploration. Also,
the intensity and frequency of contact with AIDS patients
denoted by ACS score was seen to be predictive of
depersonalization. This definitely raises the question as to
whether there are unique features in AIDS care that induce
stress in a caregiver. This also allows scope for designing
interventions aimed at relieving stress in these situations. Our
finding that subjects who used some strategy to deal with stress
scored lower on EE domain indicate that interventions aimed at
promoting stress reduction method may decrease staff stress in
AIDS palliative care.
It is of interest to note that MBI scores in our study are
different from that reported in previous studies. Our subjects
scored less on EE compared to other samples.[11],[13] However it
is of interest to note that the scores on PA in our sample was
also lower than in these studies indicating poor personal
accomplishment. It seems that compared to Western studies,
though the degree of emotional exhaustion was found to be less,
feelings of self worth in work as measured by PA scale in MBI
were less. Low PA maybe due to inadequate resources and
inability to meet the physical and financial needs of people
living with HIV AIDS which might result in lower self worth.
We found that higher scores on EE and DP were associated with
reporting having considered leaving the work. This underscores
the importance and usefulness of using the MBI in this work
setting to identify those staff who are likely to leave AIDS
related palliative care.
We also found that those who had children reported lower levels
of depersonalization. Similar results have been reported by Beck
Friis,[25] who found that being married and
having children was associated with better job satisfaction. Our
finding that being female was associated with higher personal
accomplishment scores has not been reported before. Some
variables such as age, duration of work, occupational group,
frequency of contact with patients and reason for starting to
work in the field of HIV/AIDS, which were found relevant in
western literature did not seem to have any association with the
MBI scores in the current study. The difference in sample
characteristics between this study and others may have
contributed to the variation in results.
The limitations of the current study include a small sample size
and lack of a control group. Also we did not attempt to identify
possible personal variables such as personality traits, ways of
coping, available social supports and current and past stressful
life events that could contribute to stress. It would be useful
for future studies to address burnout issues in people in full
time HIV palliative care and also compare the profile of burnout
between cancer and HIV related palliative care.
The strengths of this study include the use of a standardized
tool (MBI) with established reliability and validity. We
included different occupational sub groups to facilitate
comparison with most palliative care centers in India, which
also use interdisciplinary teams to provide care.
The importance of the current study lies in the fact that this
is the first attempt to identify and explore staff stress in
palliative care set up related to HIV in India. The findings of
our study suggest that staff stress in palliative care is an
issue that needs to be addressed by professionals in the field.
It is important that research on staff stress and burnout in the
Indian context be fuelled to provide data on this potentially
vexing problem that may slow the growth of palliative care in
India. We propose that further studies need to be carried out
with larger samples and across settings (HIV/AIDS and cancer).
Studies would have to look at all the variables including
socio-demographic, personal and environmental to yield a
comprehensive picture of the issue of staff stress. More studies
are required from developing countries to facilitate a thorough
understanding of staff stress in palliative care.
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