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Introduction
A care giver is a person
who provides assistance to someone incapacitated. It
can be a husband who has suffered a stroke; father with
Parkinson's disease; a mother-in-law with cancer; a
grandmother with Alzheimer's disease or a son with traumatic
brain injury from a car accident. Informal caregiver
and family caregiver are terms that refer to individuals
such as family members, friends and neighbors who provide
care to their dear ones without any financial benefit.
Whereas formal caregivers are volunteers or paid care
providers associated with a service system. (1, 2)
Emotions in care giving, especially guilt, have not
received adequate attention in the research literature,
even though they are frequently observed in caregivers
(3). Guilt has been described as a feeling associated
with the recognition that one has violated a personally
relevant moral or social standard" (4). Guilt has
also been suggested as a factor contributing to depression
and distress in caregivers (5) and it is considered
as a main emotion for caregivers, which may exacerbate
their burden. (6)
More women than men are reported as Caregivers. An estimated
59% to 75% of Caregivers are reported as women.(7,8)
Other studies have found women caregivers to be involved
in most difficult caregiving tasks (i.e., bathing, toileting
and dressing) when compared with their male counterparts,
who are more likely to provide financial support, arrange
care, and other less physically demanding tasks.(9,10)
A number of studies have found female caregivers to
be more likely than males to suffer from anxiety, depression,
guilt and other symptoms associated with emotional stress
due to Caregiving.(11,12)
Guilt arises because care giving can lead to psychological
and mental health deterioration. Studies consistently
report higher levels of depression and mental issues
among Caregivers (13) Guilt can affect one's day to
day life whether it's family, social or professional
life. It is believed that sharing feelings can lead
to reduced guilt. While researchers have long known
that care giving can have deleterious mental health
effects for Caregivers, research shows that Caregiving
can have serious physical health consequences as well.
Studies have found that caregivers may have increased
blood pressure and insulin levels, (14) may have impaired
immune systems(15) and may be at increased risk for
cardiovascular diseases (16) among other adverse health
outcomes. While care giving can be a very stressful
situation for many caregivers, studies also show that
there are beneficial effects as well, including feeling
positive about being able to help a disabled loved one,
feeling appreciated by the care recipient, and feeling
that their relationship with the care recipient had
improved.(8,17)
Based on identified need, we decided to study Care Giver
guilt and its impact on their life and ways to overcome
it.
Materials and Methods
A cross sectional study was conducted between July and
September, 2015 at a teaching hospital in Karachi. A
total of 400 Care Givers were interviewed. Participants
were asked to fill out a consent form. Human rights
were protected under the Declaration of Helsinki. Selection
criteria included were age more than 18 years older
and the participant was required to be a current or
a former Care Giver of a family member. The demographic
variables recorded include age, home town, occupation
and education status. Variables included duration of
care giving, current Care Giver or Care Giver in previous
five years, family member who received care, whether
guilt occurred due to care giving. Questions were included
on ways of countering guilt and making care giving a
better experience for both the care giver and the receiver.
Questionnaire was a bilingual questionnaire and it had
one open ended question. The data was entered using
SPSS software. Chi-squared test was used to compare
categories. P-value <0.05 was considered statistically
significant. The questionnaire was administered in English
and Urdu languages.
Results
400 Care Givers (215 men and 185 women) were interviewed.
The majority (228) belonged to younger age group (18-30
years). They were mostly single, the majority students
giving/ had given care to their parents or grandparents.
Most of them had or were giving care to their mothers
(157) followed by father (105). The majority (256) were
current Caregivers while the rest provided care within
the previous five years. (Table 1)
Table 1: Socio-demographic characteristics of study
participants (n=400)
A significant 186 respondents reported "Guilty"
feelings due to deficiencies in Caregiving and 50% felt
it negatively affected their life. 108 respondents were
bothered by negative thoughts arising from "Guilty"
feelings and 102 shared with someone; Mother (52) being
most common. (Table 2-A)
Table 2-A: Individual responses of Participants on "Guilt"
among Caregivers (n=186)
Table 2-B: Individual responses of participants on
guilt among Caregivers (n=400)
170 respondents felt
"Guilty" feeling among Caregivers, arising
out of deficiencies in Caregiving is inevitable. 255
respondents felt that Health Care Providers should provide
support to Caregivers. 167 respondents felt that Patients
realize negative impact of "Guilty feelings"
among Caregivers and try to mitigate. (Table 2-B)
Tables 3, 4-A and 4-B compare respondent's responses
of current Caregivers with those who provided Caregiving
over previous five years.
Table 3: Participant's responses on Care Giving
Table: 4-A: Guilt and its Impact on Care Givers
Table 4-B: Guilt and its Impact on Care Givers
We asked the Caregivers three ways to reduce care giver
guilt. Common responses included improving quality of
care, sharing responsibilities and feelings, professional
help, financial and family support, using spiritual
support including praying and reading Holy Books. Another
interesting response was psychotherapy which we believe
can be an important and very helpful way of countering
guilt.
Discussion
The results of this study are consistent with those
of previous studies suggesting the relevance of guilt
in care giving outcomes. We have found associations
between guilt and important outcome variables such as
depression, negative impact on life suggesting a signi?cant
relationship between guilt feelings and caregiver distress.
Men constituted the majority of the caregivers in this
study. This is in keeping with the tradition of the
area where male relatives constitute the majority of
caregivers as they are the sole bread earners in our
society in the majority of the families and take care
of their family. On the contrary in past studies women
Caregivers are usually more involved than male Caregivers
in the roles in assisting and nurturing all family members,
besides the care recipient. Given that women usually
perceive more responsibility for caring for all family
members, they are likely to be more vulnerable to guilt
associated with the perception that they are neglecting
other relatives due to care giving. In fact, women Caregivers
have been found to report more role conflict, more caregiving
costs and more interference with family and leisure
time than do men (18).
In our study, 186 individuals experienced guilt during
their care giving period. One possible explanation is
the additional burden of providing for the needs of
other members of the family by the male Caregivers leading
to increasing guilt while taking care of their dear
ones.
It was observed in our study that the majority of the
care givers was single and was in their student life
enrolled in universities for graduation or post graduation
degrees. About 45 percent of our Caregivers were employed.
It is believed that good income and socioeconomic status
can have lesser guilt feelings in care giving.(19) One
possible explanation for a low prevalence of guilt feelings
can be the proximity and type of emotional relationship
between Caregivers and the loved ones before the process
of integration and adaptation to Caregiver role(20).
Guilt feelings are bound to have a negative impact on
daily life which is apparent by observations in our
study. About 93 Individuals in our study declared guilt
feelings to be negatively affecting their lives. They
suffered from anxiety and depression due to guilt feelings.
Regarding the relationship between higher levels of
burden and the lower educational or expertise level
of the Caregivers often link feelings of anxiety and
distress that impact negatively on the care delivered,
as well as in caregiver's own health. (21)
Our study demonstrates that family support and sharing
guilt feelings will have a positive influence on care
givers. Only 34 care givers from the 186 who had guilt
feelings said they would want a professional intervention
in dealing with guilt. This aspect is an alien concept
in our society. Caregiving issues tend to be kept within
family circle. More than half care givers believed that
best care giving can only be provided by close family
members and professional support cannot replace it.
Our society is a family oriented society with joint
family systems.
Strength of our study included participants from diverse
regions all over from Pakistan, with the majority from
Karachi. And we had a full range of age groups ranging
from 18 year olds to more than 60. Limitations included
that our focus was not a particular disease or ailment.
We recruited all Care givers who were giving care to
their family members whether for diabetes, hypertension
or an elderly having decreased mobility at home.
Conclusion
Significant guilt arises among Caregivers due to deficiencies
in Caregiving. It is important for Health Care Providers
to explore, identify and manage such "Guilty"
feelings among Caregivers. Further research in this
area is recommended.
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Available from: http://www.scielo.br/pdf/reeusp/v44n4/03.pdf
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