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International Journal of Humanities and Social Science Invention
ISSN (Online): 2319 – 7722, ISSN (Print): 2319 – 7714
www.ijhssi.org ||Volume 5 Issue 1 ||January. 2016 || PP.45-52
www.ijhssi.org 45 | P a g e
Social support among the Caregivers of Persons Living with
Cancer
Dr.A.Thirumoorthy1
, Dr. P. Saraswati Devi2
, Dr.K.Thennarusu3
1
Additional Professor, Dept. of Psychiatric Social Work, National Institute of Mental Health and Neuro
Sciences (NIMHANS), Bangalore-29.
2
Professor& Head, Dept. of Palliative Care & Anesthesiologist, Kidwai Memorial Institute of
Oncology (KIDWAI), Bangalore.
3
Professor, Dept. of Biostatistics, National Institute of Mental Health and Neuro Sciences (NIMHANS),
Bangalore-29.
Abstract:The social support emphasize as the support given to any person in a troublesome or burdensome
situation by family members, relatives as well as resources exerted by social connections, is effective in
promoting physical health and feeling oneself good. The present study consisted of 300 caregivers of persons
with cancer was selected based on simple random sampling, and with inclusion and exclusion criteria. Those
patients satisfying the inclusion and exclusion criteria and attending both outpatient and inpatient services of
cancer specialty hospital in KIDWAI Bangalore, Karnataka were selected randomly. The data was collected
from the patients & caregivers of persons living with cancer who fulfill the inclusion/exclusion criteria were
taken up for the study after their consent. Multidimensional Scale of Perceived Social Support (Zimet et al,
1998) was administered to understand Perceived Social Support. The interviews and the instruments were
administered by research experts.The Results suggest that there were poor social support found in caregivers of
married, female, belong to rural domicile, illiterate, and,caregivers who were not heard about the treatment of
cancer.
Keywords:Social support, Caregivers, Cancer
I.INTRODUCTION
Social support of caregivers of person living with cancer
Social difficulties may persist into adulthood. Establishing relationships can be perceived as problematic for
people who are uncomfortable about their appearance. In addition, once a relationship has been established,
concerns about the visible difference may cause ongoing difficulties, for example in relation to intimacy. These
problems usually relate more to the affected person than the partner. Influence of social support, depression, and
self esteem on the burden of care among 278 informal caregivers of oncology survivors, Nigeria was carried out.
The cross sectional correlational study showed a significant main effect of self esteem and interaction effect of
social support and depression on caregivers’ burden. Caregivers with high levels of depression and others with
high levels of social support recorded significantly higher levels of caregivers’ burden. This suggests the need
for improving the psychological well-being of informal caregivers of oncology survivors in the expanding role
of family and community members in caring for cancer survivors (Adejumo, 2009).From the oncology out
survivor clinic of the Marmara Medical School Hospital in Istanbul, Fifty one caregivers of adult cancer
survivors were recruited to investigate the relations among the psychological well-being (i.e depression and
state/trait anxiety levels), attachment patterns (i.e secure, ambivalent, avoidant), and the perceived social support
from family/friends/significant others of caregivers of cancer survivors. Caregivers were assessed with the Adult
Attachment scale, the Beck Depression Inventory, State-trait Anxiety Inventories, and the Multidimensional
Scale of perceived social support. Stepwise multiple regression analysis indicated that depression was predicted
by ambivalent attachment and the perceived social support from family (Kuscu et al., 2009).In a study
conducted at University of Nebraska College of Nursing, predictors of and trajectories for evening and morning
fatigue were evaluated in family care givers of oncology survivors using hierarchical linear modelling. Evening
fatigue trajectory fit a quadratic model. Predictors included baseline sleep disturbances in family caregivers and
baseline fatigue in survivors. Morning fatigue trajectory fit a linear model. Predictors were baseline trait anxiety,
levels of perceived family support, and baseline morning fatigue in survivors. Evaluating family caregivers for
sleep disturbance, anxiety and poor family support, as well as high levels of survivor fatigue, could identify
those family caregivers at highest risk for sustained fatigue trajectories (Fletcher et al., 2009).
Social support among the Caregivers of Persons Living…
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A study from Israel examined the effect of perceived support from different agents (spouse, family,
friends, and religion-spirituality) on psychological distress experienced by women with advanced breast cancer
and their male spouses. 150 couples consisting of women with advanced breast cancer and their spouses
completed the Cancer Perceived Agent of Support Questionnaire and the Brief Symptom Inventory Scale.
Spouses reported more psychological distress (global, depression and anxiety) than survivors. Both survivors
and spouses report a similar level of spousal support, and spouses reported a lower level of support provided
from family and friends. Perceived support in the study contributed significantly to the explanations of global
psychological distress, depression and anxiety both for survivors and their spouses. However, the specific agents
of support that was significant in explaining these outcomes varied between survivors and their spouses. For
survivors, family support received by both survivor and partner was the most important source of support,
protecting from psychological distress, while for male partners, support from friends was most important.
Religious based support was found to contribute negatively to the psychological distress of the survivor and
spouse. The study emphasized the role of breast cancer spouses as care receivers in parallel to their role as
caregivers, which is especially important in light of the high psychological distress reported by the spouses
(Hasson-Ohayon, Goldzweig, Braun, &Galinsky, 2010).
II. SCOPE AND OBJECTIVE
Aim: To study the level of social support among the caregivers of persons living with cancer.
Objectives:
 To find out the socio demographic characteristics of persons with cancer and their caregivers
 To find out the association of socio demographic characteristics and social support among the caregivers of
persons living with cancer.
III. RESEARCH METHODOLOGY
The present study has adopted a descriptive research design to describe the variables associated with
various psychosocial aspects of caregivers of persons with cancer. It aims at describing the variables associated
with the psychosocial correlates and problems of cancer patients with caregivers due to cancer and its
treatments. The variables ranged from socio-demographic details and quality of life. The caregivers of patients
diagnosed with cancer (acute, middle or end of life phase of cancer) who are admitted in cancer specialty
hospital in KIDWAI (Kidwai Memorial Institute of Oncology) Bangalore. A sample of 300 caregivers of
persons with cancer was selected based on simple random sampling, and with inclusion and exclusion criteria.
Those patients satisfying the inclusion and exclusion criteria and attending both outpatient and inpatient services
of cancer specialty hospital in KIDWAI Bangalore, Karnataka were selected randomly. Based on the pilot
information regarding number of inpatient and outpatient at the KIDWAI centers in Bangalore random numbers
was taken care of the patient load at the given center. The data was collected from the patients & caregivers of
persons living with cancer who fulfill the inclusion/exclusion criteria were taken up for the study after their
consent. Hospital registration number during the study period was used to obtain a representative random
sample. Multidimensional Scale of Perceived Social Support was administered to understand the social support.
The interviews and the instruments were administered by research experts.
IV. RESULT
TABLE-1: Socio demographic variables
Variables Frequency Percentage
Gender
Male 191 63.7%
Female 109 36.3%
Marital status
Single 57 19.0%
Married 240 80.0%
Divorced 2 0.7%
Separated 1 0.3%
Religion
Hindu 265 88.3%
Muslim 28 9.3%
Christian 7 2.3%
Social support among the Caregivers of Persons Living…
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Domicile
Rural 185 61.7%
Urban 102 34.0%
Semi-urban 13 4.3%
Occupation
Housewife 61 20.3%
Teacher 9 3.0%
Farmer 58 19.3%
Service 3 1.0%
Domestic help 7 2.3%
Business 16 5.3%
Professional 3 1.0%
Others 143 47.7%
Qualification
Illiteracy 40 13.3%
Primary 169 56.3%
Secondary 36 12.0%
Graduate 49 16.3%
PG 6 2.0%
The study sample consists of N=191 (63.7%) males and N=109 (36.6%) females,
The distribution of marital status as single, married, divorced, and separated ration was 57:240:2:1 with majority
80% (N = 240) of the caregivers belonging to married category 19% (N = 57) of the caregivers were unmarried,
, 0.7% (N = 2) of the caregivers belonging to divorced category, and the remaining 0.3% (N = 1) of the
caregivers were separated.
The distribution of religion of caregivers as Hindu, Islam, Christianity, with a majority of 88.3% (N = 265) of
the caregivers followed the Hindu religion, 9.3% (N = 28) of the caregivers followed Islam, and the remaining
2.3% (N = 7) of the caregivers followed Christianity.
The distribution of domicile of caregiversas the majority of caregivers hailing from Rural areas (N=185, 61.7
%), from Urban areas (N=102, 34.0%) and the remaining were 4.3% (N = 13) of the caregivers belonging to
semi urban area.
The study sample consists majority of the caregivers were employed in other kinds of work such as auto drivers,
tailors and students, 47.7% (N=143), while 20.3% (N=61),were house wife, 19.3%(N=58),were employed in
agriculture, 5.3%(N=16), of them had businesses, 3%(N=9),were teachers, 2.3%(N=7),of the caregivers were
employed as domestic helps and the remaining 1%(N=3), of the caregivers were employed in the service sector,
1%(N=3), of the caregivers were employed as professionals.
Social support among the Caregivers of Persons Living…
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The study sample consists majority of the respondents were completed, their primary level (class 1 to 7th
standard) 56.3% (N=169), while 16.3 %(N=49), were graduates, 13.3%(N=40), of the respondents were
illiterate, 12%(N=36), were completed up to secondary level (Class 8th
to Class 10th
) and the remaining 2%
(N=6), were completed their post graduate level.
TABLE-2: Comparison of Socio demographic variables between male and female
Variables Male (n=191 )
Mean (SD)
Female(n=109)
Mean (SD)
U Score P value
Age 36.44 (0.83) 36.75 (0.98) -0.756 0.450
Income 6368.48 (5035.80) 4438.95 (3323.49) -3.448 <0.001**
Duration of
cancer
(days)
183.92 (318.04) 331.15 (690.54)
-0.995 0.320
Duration in
OPD (days)
155.45 (307.37) 257.78 (642.41)
-0.269 0.788
Duration in
IPD (days)
16.61 (23.42) 19.44 (26.96)
-0.090 0.928
To test the difference between two groups Mann-Whitney U test was used. It was found that the income of
males and females were significantly different with males having significantly higher income compared to
females. (U=-3.448, p=<0.001).
No significant differences were found between other variables such as Age, Duration of cancer (days), Duration
in OPD (days) and Duration in IPD (days) with respect to males and females.
TABLE-3: Comparison of Multidimensional Scale of Perceived Social Support between male and
female
Variables Male (n= 191 )
Mean (SD)
Female(n= 109)
Mean (SD)
U Score P value
Social support
from Significant
others
15.71 (7.32)
15.38 (7.88)
-0.387 0.698
Social Support
from Family
19.94(4.98)
18.9450 (5.75)
-1.289 0.197
Social Support
from Friend
14.62 (6.48) 10.36 (7.05)
-4.957 <0.001**
Mann-Whitney U test was used to compare the Social Supportexperienced by the male and female caregivers.
Social Support from Friends domain was significantly different with males were greater than females which was
statistically significant. (U=-4.957, p=<0.001),
No significant difference was found among other domains such as Social support from Significant others and
Social Support from Family.
TABLE-4: Comparison of Multidimensional Scale of Perceived Social Support between single
and married
Variables Single (n= 59 )
Mean (SD)
Married (n= 241)
Mean (SD)
U Score P value
Social support from
Significance others
17.83 (7.40)
15.04 (7.46)
-2.541 0.011*
Social Support from
Family
20.67 (4.77)
19.31 (5.37)
-1.796 0.073
Social Support from
Friend
16.44 (5.76) 12.25 (7.03)
-4.068 <0.001**
Social support among the Caregivers of Persons Living…
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Mann-Whitney U test was used to compare the Social Support experienced by the single and married caregivers
with cancer patients. Social support from Significance others was significantly differing with single caregivers
were greater than married caregivers which was statistically significant (U=-2.541, p=<0.001), Social Support
from Friend domain was significantly differing with single caregivers were greater than married caregivers
which was statistically significant. (U=-4.068, p=<0.001),
There was no significant difference found among other domain Social Support from Family with respect to the
single and married caregivers living with cancer patients.
TABLE-5: Comparison of Multidimensional Scale of Perceived Social Support between Hindu and
Other Religion
Variables Hindu
(n= 265)
Mean (SD)
Other Religion (n=
35)
Mean (SD)
U Score P value
Social support from
Significance others
15.69(7.61)
14.82 (6.80)
-0.475 0.634
Social Support from
Family
19.78 (5.17)
18.02(5.92)
-1.763 0.078
Social Support from
Friend
13.15 (7.01) 12.54 (6.94)
-0.598 0.550
Mann-Whitney U test was used to compare the Perceived SocialSupport experienced by the Hindu and Other
Religion caregivers with cancer patients. The result describes that there was no significant difference between
the group domains on basis of Social support.
TABLE-6: Comparison of Multidimensional Scale of Perceived Social Support between Rural and
Urban/semi urban
Variables Rural(n= 185)
Mean (SD)
Urban (n= 115)
Mean (SD)
U Score P value
Social support from
Significance others
14.86 (7.55) 16.77 (7.35) -2.266 0.023*
Social Support from
Family
19.24 (5.35) 20.12 (5.14) -1.626 0.104
Social Support from
Friend 12.45 (7.26) 14.07 (6.44) -1.639 0.101
Mann-Whitney U test was used to compare the Social Support experienced by the rural and urban caregivers
with cancer patients. Social support from Significance others domain was significantly differing with urban
caregivers were greater than rural caregivers which was statistically significant (U=-2.266, p=<0.001).
No significant difference was found among other domains
TABLE-7: Comparison of Multidimensional Scale of Perceived Social Support between persons
heard about cancer and not heard about the cancer
Variables Heard about
cancer(n= 208)
Mean (SD)
Not heard about cancer
(n= 92)
Mean (SD)
U Score P value
Social support from
Significance others 17.10 (7.20) 12.19 (7.15) -5.222 <0.001**
Social Support from Family 20.66 (4.62) 17.13 (5.86) -5.251 <0.001**
Social Support from Friend
14.29 (6.61) 10.32(7.08) -4.368 <0.001**
Mann-Whitney U test was used to compare the Social Support experienced by the person’s heard about cancer
and not heard about caregiver’s with cancer patients. There was a significant difference with the person’s heard
about cancer caregivers were greater than person’s not hearing about cancer. It was found among all the
domains such as Social support from Significance others (U=-5.222, p=<0.001), Social Support from Family
domain (U=-5.251, p=<0.001), Social Support from Friend domain (U=-4.368, p=<0.001).
Social support among the Caregivers of Persons Living…
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TABLE-8: Comparison of Multidimensional Scale of Perceived Social Support between caregivers of
cancer patients underwent surgery and other modes of treatment
Variables Surgery (n= 261)
Mean (SD)
Other treatment(n=
39)
Mean (SD)
Z Score P value
Social support from
Significant others
15.87 (7.51) 13.74 (7.40) -1.568 0.117
Social Support from
Family
19.66.30) 19.00 (5.17) -0.948 0.343
Social Support from
Friend
13.00 (7.04) 13.61 (6.75) -0.564 0.573
Mann-Whitney U test was used to compare the Perceived SocialSupport experienced by the caregivers of cancer
patients underwent surgery and other modes of treatment. The result describes that there was no significant
difference between the group domains.
TABLE-9: Comparison of Perceived Social Support between caregivers of cancer patients whether
they had taken treatment or not
Variables Treatment(n=49)
Mean (SD)
No treatment (n= 251)
Mean (SD)
Z Score P value
Social
support from
Significance
others
14.06 (7.98) 15.89 (7.40) -1.655 0.098
Social
Support from
Family
19.36 (5.97) 19.62 (5.15) -0.106 0.916
Social
Support from
Friend
12.46 (7.43) 13.19 (6.91) -0.321 0.748
Mann-Whitney U test was used to compare the Perceived SocialSupport experienced by the caregivers of cancer
patients had taken treatment and they not have taken treatment. The result describes that there was no significant
difference between the group domains.
TABLE-10: Comparison of Multidimensional Scale of Perceived Social Support between caregivers
according to education
Variables Illiterate
(n=40)
Mean (SD)
Primary
(n=169)
Mean (SD)
Secondary
(n=36)
Mean (SD)
Graduate
(n=55)
Mean (SD)
U Score P value
Social support
from
Significance
Others
9.60 (4.85) 15.25 (7.18) 17.50 (7.75) 19.76 (7.05) 46.651 <0.001**
Social Support
from Family
15.00 (5.49) 19.73 (4.73) 21.00 (4.85) 21.49 (5.20) 43.082 <0.001**
Social Support
from Friend 7.75 (5.55) 12.30 (6.87) 14.80 (6.43) 18.21 (4.84) 58.995 <0.001**
ANOVA U test was used to compare the multidimensional scale of perceived social support experience by the
caregivers of cancer patient’s qualification. There was significant difference with the graduate caregiver of
cancer patients and was greater than other qualification such as illiterate, primary, secondary caregivers of
cancer patients which was statistically significant among all domains such as Social support from Significance
others (U=46.651, p=<0.001), Social Support from Family (U=43.082, p=<0.001), and Social Support from
Friend(U=58.995, p=<0.001).
Social support among the Caregivers of Persons Living…
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V. DISCUSSION
Comparison between Multidimensional Scale of Perceived Social Support and Dependent Variables
Caregiving has been identified as a chronic stressor that places caregivers at risk for physical and emotional
problems (Aneshensel, Pearlin, Mullan, Zarit, &Whitlach, 1995). The present study found that Social Support
from Friend domain was significantly different with males were greater than females which was statistically
significant. According to the National Caregiver Survey, the majority of caregivers (71.5%) are daughters and
wives (Stone, Cafferata, &Sangl, 1987).Several theories have suggested that gender differences in caregivers'
outcomes exist because, compared with male caregivers, female caregivers face higher levels of caregiving
stressors, have fewer social resources, and report lower levels of psychological and physical health. These
suggestions have been made, for example, in the gender-role socialization framework (Gilligan, 1982), the
gender-role expectation framework (Barusch&Spaid, 1989), and in theories of labor marked segregation and
household labor (Ross, 1987). However, only a portion of the available studies have found empirical support for
gender differences in caregiver variables (Yee & Schulz, 2000). In contrast, it has been suggested that observed
gender differences in caregiver health merely reflect gender differences in general well-being rather than
caregiving-specific factors (e.g., Vitaliano, Zhang, &Scanlan, 2003).
Mann-Whitney U test was used to compare the Social Support experienced by the single and married caregivers
with cancer patients. Social support from Significance others and Social Support from Friend was significantly
differs with single caregivers were greater than married caregivers which was statistically significant. This study
result matched with previous research done by Sabire (2013). Single caregivers had higher MSPSS scores than
the married, all differences being statistically significant. This could be Single caregivers had higher MSPSS
scores than the married. Single persons may have fewer responsibilities, while married caregivers have to cope
with their family's problems in addition to those of their patients. The current study also found that Social
support from Significance others domain was significantly differs with urban caregivers were greater than rural
caregivers which was statistically significant. The rational reason could be for this finding is rural people are
less likely to be employed than their urban counterparts, so as they are poor in economically and trying to meet
the basic needs it is difficult for them to establish social relationship and that lead to poor availability of support
from community. This study also found significant difference with the person’s heard about cancer caregivers
were greater than person’s not hearing about cancer. It was found among all the domains such as Social support
from Significance others, Social Support from Family, and Social Support from Friend. And there was
significant difference with the graduate caregiver of cancer patients and was greater than other qualification
such as illiterate, primary, secondary caregivers of cancer patients which was statistically significant were found
among all domains such as Social support from Significance others, Social Support from Family, and Social
Support from Friend. This study result matched with Sabire (2013). In this study the author found that those
who studied graduate scores are directly related to it. This may indicate the importance of education in coping
with problems. Our study also found a positive correlation between education level and income level. Well-
educated caregivers usually have higher income levels. Their social support networks and their ability to access
information may be better. Previous studies have reported that caregivers with a higher level of education have
more extensive social network; a correlation with lower caregiver burden was also established.
VI. CONCLUSION
In conclusion, The Results suggest that there were poor social support found in caregivers of married, female,
belong to rural domicile, illiterate, and, caregivers who were not heard about the treatment of cancer. Family
caregivers of patients with cancer need stronger support in order to improve their social support. In the light of
all these findings, in order to help the care givers, they should be informed about the potential burden and
consequences of the care giving process and adaptation of caregivers into care processes should be monitored
closely. Throughout this process, the assessment of social support systems in coordination with care givers may
provide effective results in enhancing caregivers’ awareness on this issue. As another solution, it is deemed
necessary to provide professional consultancy services to caregivers on the issue of social support and
encourage them to receive such services. Support by professional medical staff appears to be very important for
permanent family-member caregivers, especially so if they are over 50 years old, female, married, women, with
a low educational level, a spouse of the patient cared for, providing care for four years or longer, or caring for a
dependent patient. It is essential that the needs of caregivers, as well as their health status and sources of
support, should be identified in accordance with the holistic approach, that particular plans should be made to
reduce the burden of caregiving and that these plans should be monitored regularly. Being in constant
communication with other family members may decrease problems. Discussing problems with nurses will allow
caregivers to improve family-internal communication, identify needs and adjust to a disease that keeps
Social support among the Caregivers of Persons Living…
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progressing and changing. Sharing caregiving experiences in family meetings may be beneficial and relaxing for
caregivers. Motivating the social support networks and encouraging caregivers to make use of these should
prove helpful in coping with the problems of patient care, helping the caregivers adapt to their roles and
providing relief from isolation. Sharing news, interacting the friends and neighbors, discussing problems and
feelings may all help relieve the stress of caring for a patient. Providing social support to caregivers will
decrease the use of nursing homes, which have very high costs.
Acknowledgements:
This study is funded by ICSSR (Indian Council of Social Science Research) New Delhi.
REFERENCES
[1] Adejumo, A.(2009) Influence of social support, depression, and self-esteem on burden of care among caregivers of oncology
patients. World Hospital Health Survey.45(3):19-21.
[2] Ardahan M (2006). Social support and the nursing. J Ataturk University School of Nursing. 9, 68-75 (in Turkish).
[3] Barusch, A. S., Spaid, W. M. (1989). Gender differences in caregiving: Why do wives report greater burden. The
Gerontologist, 29,667-676
[4] Choi HK. Cultural and noncultural factors as determinants of caregiver burden for the impaired elderly in South Korea.
Gerontologist. 1993; 33: 8-15. [59] Pinquart M, Sörensen S. Gender differences in caregiver stressors, social resources, and
health: An updated mata-analysis. J Gerontol. 2006; 61: 33-45.
[5] Fletcher,B.S et al., (2009)Trajectories of Fatigue in Family Caregivers of Patients Undergoing Radiation Therapy for Prostate
Cancer,Research Nursing Health. 2009 Apr; 32(2): 125–139.
[6] Gilligan, C. (1982). In a different voice. Cambridge, MA: Harvard University Press.
[7] Hasson-Ohayon I, Goldzweig G, Braun M, Galinsky, D. (2010). Women with advanced breast cancer and their spouses: diversity
of support and psychological distress. Psychooncology. 2010 Nov;19(11):1195-204.
[8] Keller BK, Magnuson TM, Cernin PA, Stoner JA, Potter JF. The significance of social network in a geriatric assessment
population. Aging Clin Experiment Res. 2003; 15: 512-517.
[9] Kuscu et al., (2009). The association between individual attachment patterns, the perceived social support, and the psychological
well-being of Turkish informal caregivers,Psycho-Oncology 18(9):927-35.
[10] Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stres process: an overview of concepts and their measures.
Gerontologist. 1990; 30: 583-594.
[11] Ross, C. E. (1987). The division of labor at home. Social Forces, 47,816-833.
[12] Sabire, Y. (2013) The relationship between care burden and social support in Turkish Alzheimer patients family caregivers:
Cross-sectional study: Journal of Nursing Education and Practice, 2013, Vol. 3, No. 9
[13] Stone, R., Cafferata, G. L., Sangl, J. (1987). Caregivers of the frail elderly: A national profile. The Gerontologist, 27,616-626
[14] Vitaliano, P., Zhang, J., Scanlan, J. M. (2003). Is caregiving hazardous to one's physical health? A meta-analysis. Psychological
Bulletin, 129,946-972.
[15] Yee, J. L., Schulz, R. (2000). Gender differences in psychiatric morbidity among family caregivers: A review and analysis. The
Gerontologist, 40,147-164.

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Social support among the Caregivers of Persons Living with Cancer

  • 1. International Journal of Humanities and Social Science Invention ISSN (Online): 2319 – 7722, ISSN (Print): 2319 – 7714 www.ijhssi.org ||Volume 5 Issue 1 ||January. 2016 || PP.45-52 www.ijhssi.org 45 | P a g e Social support among the Caregivers of Persons Living with Cancer Dr.A.Thirumoorthy1 , Dr. P. Saraswati Devi2 , Dr.K.Thennarusu3 1 Additional Professor, Dept. of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore-29. 2 Professor& Head, Dept. of Palliative Care & Anesthesiologist, Kidwai Memorial Institute of Oncology (KIDWAI), Bangalore. 3 Professor, Dept. of Biostatistics, National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore-29. Abstract:The social support emphasize as the support given to any person in a troublesome or burdensome situation by family members, relatives as well as resources exerted by social connections, is effective in promoting physical health and feeling oneself good. The present study consisted of 300 caregivers of persons with cancer was selected based on simple random sampling, and with inclusion and exclusion criteria. Those patients satisfying the inclusion and exclusion criteria and attending both outpatient and inpatient services of cancer specialty hospital in KIDWAI Bangalore, Karnataka were selected randomly. The data was collected from the patients & caregivers of persons living with cancer who fulfill the inclusion/exclusion criteria were taken up for the study after their consent. Multidimensional Scale of Perceived Social Support (Zimet et al, 1998) was administered to understand Perceived Social Support. The interviews and the instruments were administered by research experts.The Results suggest that there were poor social support found in caregivers of married, female, belong to rural domicile, illiterate, and,caregivers who were not heard about the treatment of cancer. Keywords:Social support, Caregivers, Cancer I.INTRODUCTION Social support of caregivers of person living with cancer Social difficulties may persist into adulthood. Establishing relationships can be perceived as problematic for people who are uncomfortable about their appearance. In addition, once a relationship has been established, concerns about the visible difference may cause ongoing difficulties, for example in relation to intimacy. These problems usually relate more to the affected person than the partner. Influence of social support, depression, and self esteem on the burden of care among 278 informal caregivers of oncology survivors, Nigeria was carried out. The cross sectional correlational study showed a significant main effect of self esteem and interaction effect of social support and depression on caregivers’ burden. Caregivers with high levels of depression and others with high levels of social support recorded significantly higher levels of caregivers’ burden. This suggests the need for improving the psychological well-being of informal caregivers of oncology survivors in the expanding role of family and community members in caring for cancer survivors (Adejumo, 2009).From the oncology out survivor clinic of the Marmara Medical School Hospital in Istanbul, Fifty one caregivers of adult cancer survivors were recruited to investigate the relations among the psychological well-being (i.e depression and state/trait anxiety levels), attachment patterns (i.e secure, ambivalent, avoidant), and the perceived social support from family/friends/significant others of caregivers of cancer survivors. Caregivers were assessed with the Adult Attachment scale, the Beck Depression Inventory, State-trait Anxiety Inventories, and the Multidimensional Scale of perceived social support. Stepwise multiple regression analysis indicated that depression was predicted by ambivalent attachment and the perceived social support from family (Kuscu et al., 2009).In a study conducted at University of Nebraska College of Nursing, predictors of and trajectories for evening and morning fatigue were evaluated in family care givers of oncology survivors using hierarchical linear modelling. Evening fatigue trajectory fit a quadratic model. Predictors included baseline sleep disturbances in family caregivers and baseline fatigue in survivors. Morning fatigue trajectory fit a linear model. Predictors were baseline trait anxiety, levels of perceived family support, and baseline morning fatigue in survivors. Evaluating family caregivers for sleep disturbance, anxiety and poor family support, as well as high levels of survivor fatigue, could identify those family caregivers at highest risk for sustained fatigue trajectories (Fletcher et al., 2009).
  • 2. Social support among the Caregivers of Persons Living… www.ijhssi.org 46 | P a g e A study from Israel examined the effect of perceived support from different agents (spouse, family, friends, and religion-spirituality) on psychological distress experienced by women with advanced breast cancer and their male spouses. 150 couples consisting of women with advanced breast cancer and their spouses completed the Cancer Perceived Agent of Support Questionnaire and the Brief Symptom Inventory Scale. Spouses reported more psychological distress (global, depression and anxiety) than survivors. Both survivors and spouses report a similar level of spousal support, and spouses reported a lower level of support provided from family and friends. Perceived support in the study contributed significantly to the explanations of global psychological distress, depression and anxiety both for survivors and their spouses. However, the specific agents of support that was significant in explaining these outcomes varied between survivors and their spouses. For survivors, family support received by both survivor and partner was the most important source of support, protecting from psychological distress, while for male partners, support from friends was most important. Religious based support was found to contribute negatively to the psychological distress of the survivor and spouse. The study emphasized the role of breast cancer spouses as care receivers in parallel to their role as caregivers, which is especially important in light of the high psychological distress reported by the spouses (Hasson-Ohayon, Goldzweig, Braun, &Galinsky, 2010). II. SCOPE AND OBJECTIVE Aim: To study the level of social support among the caregivers of persons living with cancer. Objectives:  To find out the socio demographic characteristics of persons with cancer and their caregivers  To find out the association of socio demographic characteristics and social support among the caregivers of persons living with cancer. III. RESEARCH METHODOLOGY The present study has adopted a descriptive research design to describe the variables associated with various psychosocial aspects of caregivers of persons with cancer. It aims at describing the variables associated with the psychosocial correlates and problems of cancer patients with caregivers due to cancer and its treatments. The variables ranged from socio-demographic details and quality of life. The caregivers of patients diagnosed with cancer (acute, middle or end of life phase of cancer) who are admitted in cancer specialty hospital in KIDWAI (Kidwai Memorial Institute of Oncology) Bangalore. A sample of 300 caregivers of persons with cancer was selected based on simple random sampling, and with inclusion and exclusion criteria. Those patients satisfying the inclusion and exclusion criteria and attending both outpatient and inpatient services of cancer specialty hospital in KIDWAI Bangalore, Karnataka were selected randomly. Based on the pilot information regarding number of inpatient and outpatient at the KIDWAI centers in Bangalore random numbers was taken care of the patient load at the given center. The data was collected from the patients & caregivers of persons living with cancer who fulfill the inclusion/exclusion criteria were taken up for the study after their consent. Hospital registration number during the study period was used to obtain a representative random sample. Multidimensional Scale of Perceived Social Support was administered to understand the social support. The interviews and the instruments were administered by research experts. IV. RESULT TABLE-1: Socio demographic variables Variables Frequency Percentage Gender Male 191 63.7% Female 109 36.3% Marital status Single 57 19.0% Married 240 80.0% Divorced 2 0.7% Separated 1 0.3% Religion Hindu 265 88.3% Muslim 28 9.3% Christian 7 2.3%
  • 3. Social support among the Caregivers of Persons Living… www.ijhssi.org 47 | P a g e Domicile Rural 185 61.7% Urban 102 34.0% Semi-urban 13 4.3% Occupation Housewife 61 20.3% Teacher 9 3.0% Farmer 58 19.3% Service 3 1.0% Domestic help 7 2.3% Business 16 5.3% Professional 3 1.0% Others 143 47.7% Qualification Illiteracy 40 13.3% Primary 169 56.3% Secondary 36 12.0% Graduate 49 16.3% PG 6 2.0% The study sample consists of N=191 (63.7%) males and N=109 (36.6%) females, The distribution of marital status as single, married, divorced, and separated ration was 57:240:2:1 with majority 80% (N = 240) of the caregivers belonging to married category 19% (N = 57) of the caregivers were unmarried, , 0.7% (N = 2) of the caregivers belonging to divorced category, and the remaining 0.3% (N = 1) of the caregivers were separated. The distribution of religion of caregivers as Hindu, Islam, Christianity, with a majority of 88.3% (N = 265) of the caregivers followed the Hindu religion, 9.3% (N = 28) of the caregivers followed Islam, and the remaining 2.3% (N = 7) of the caregivers followed Christianity. The distribution of domicile of caregiversas the majority of caregivers hailing from Rural areas (N=185, 61.7 %), from Urban areas (N=102, 34.0%) and the remaining were 4.3% (N = 13) of the caregivers belonging to semi urban area. The study sample consists majority of the caregivers were employed in other kinds of work such as auto drivers, tailors and students, 47.7% (N=143), while 20.3% (N=61),were house wife, 19.3%(N=58),were employed in agriculture, 5.3%(N=16), of them had businesses, 3%(N=9),were teachers, 2.3%(N=7),of the caregivers were employed as domestic helps and the remaining 1%(N=3), of the caregivers were employed in the service sector, 1%(N=3), of the caregivers were employed as professionals.
  • 4. Social support among the Caregivers of Persons Living… www.ijhssi.org 48 | P a g e The study sample consists majority of the respondents were completed, their primary level (class 1 to 7th standard) 56.3% (N=169), while 16.3 %(N=49), were graduates, 13.3%(N=40), of the respondents were illiterate, 12%(N=36), were completed up to secondary level (Class 8th to Class 10th ) and the remaining 2% (N=6), were completed their post graduate level. TABLE-2: Comparison of Socio demographic variables between male and female Variables Male (n=191 ) Mean (SD) Female(n=109) Mean (SD) U Score P value Age 36.44 (0.83) 36.75 (0.98) -0.756 0.450 Income 6368.48 (5035.80) 4438.95 (3323.49) -3.448 <0.001** Duration of cancer (days) 183.92 (318.04) 331.15 (690.54) -0.995 0.320 Duration in OPD (days) 155.45 (307.37) 257.78 (642.41) -0.269 0.788 Duration in IPD (days) 16.61 (23.42) 19.44 (26.96) -0.090 0.928 To test the difference between two groups Mann-Whitney U test was used. It was found that the income of males and females were significantly different with males having significantly higher income compared to females. (U=-3.448, p=<0.001). No significant differences were found between other variables such as Age, Duration of cancer (days), Duration in OPD (days) and Duration in IPD (days) with respect to males and females. TABLE-3: Comparison of Multidimensional Scale of Perceived Social Support between male and female Variables Male (n= 191 ) Mean (SD) Female(n= 109) Mean (SD) U Score P value Social support from Significant others 15.71 (7.32) 15.38 (7.88) -0.387 0.698 Social Support from Family 19.94(4.98) 18.9450 (5.75) -1.289 0.197 Social Support from Friend 14.62 (6.48) 10.36 (7.05) -4.957 <0.001** Mann-Whitney U test was used to compare the Social Supportexperienced by the male and female caregivers. Social Support from Friends domain was significantly different with males were greater than females which was statistically significant. (U=-4.957, p=<0.001), No significant difference was found among other domains such as Social support from Significant others and Social Support from Family. TABLE-4: Comparison of Multidimensional Scale of Perceived Social Support between single and married Variables Single (n= 59 ) Mean (SD) Married (n= 241) Mean (SD) U Score P value Social support from Significance others 17.83 (7.40) 15.04 (7.46) -2.541 0.011* Social Support from Family 20.67 (4.77) 19.31 (5.37) -1.796 0.073 Social Support from Friend 16.44 (5.76) 12.25 (7.03) -4.068 <0.001**
  • 5. Social support among the Caregivers of Persons Living… www.ijhssi.org 49 | P a g e Mann-Whitney U test was used to compare the Social Support experienced by the single and married caregivers with cancer patients. Social support from Significance others was significantly differing with single caregivers were greater than married caregivers which was statistically significant (U=-2.541, p=<0.001), Social Support from Friend domain was significantly differing with single caregivers were greater than married caregivers which was statistically significant. (U=-4.068, p=<0.001), There was no significant difference found among other domain Social Support from Family with respect to the single and married caregivers living with cancer patients. TABLE-5: Comparison of Multidimensional Scale of Perceived Social Support between Hindu and Other Religion Variables Hindu (n= 265) Mean (SD) Other Religion (n= 35) Mean (SD) U Score P value Social support from Significance others 15.69(7.61) 14.82 (6.80) -0.475 0.634 Social Support from Family 19.78 (5.17) 18.02(5.92) -1.763 0.078 Social Support from Friend 13.15 (7.01) 12.54 (6.94) -0.598 0.550 Mann-Whitney U test was used to compare the Perceived SocialSupport experienced by the Hindu and Other Religion caregivers with cancer patients. The result describes that there was no significant difference between the group domains on basis of Social support. TABLE-6: Comparison of Multidimensional Scale of Perceived Social Support between Rural and Urban/semi urban Variables Rural(n= 185) Mean (SD) Urban (n= 115) Mean (SD) U Score P value Social support from Significance others 14.86 (7.55) 16.77 (7.35) -2.266 0.023* Social Support from Family 19.24 (5.35) 20.12 (5.14) -1.626 0.104 Social Support from Friend 12.45 (7.26) 14.07 (6.44) -1.639 0.101 Mann-Whitney U test was used to compare the Social Support experienced by the rural and urban caregivers with cancer patients. Social support from Significance others domain was significantly differing with urban caregivers were greater than rural caregivers which was statistically significant (U=-2.266, p=<0.001). No significant difference was found among other domains TABLE-7: Comparison of Multidimensional Scale of Perceived Social Support between persons heard about cancer and not heard about the cancer Variables Heard about cancer(n= 208) Mean (SD) Not heard about cancer (n= 92) Mean (SD) U Score P value Social support from Significance others 17.10 (7.20) 12.19 (7.15) -5.222 <0.001** Social Support from Family 20.66 (4.62) 17.13 (5.86) -5.251 <0.001** Social Support from Friend 14.29 (6.61) 10.32(7.08) -4.368 <0.001** Mann-Whitney U test was used to compare the Social Support experienced by the person’s heard about cancer and not heard about caregiver’s with cancer patients. There was a significant difference with the person’s heard about cancer caregivers were greater than person’s not hearing about cancer. It was found among all the domains such as Social support from Significance others (U=-5.222, p=<0.001), Social Support from Family domain (U=-5.251, p=<0.001), Social Support from Friend domain (U=-4.368, p=<0.001).
  • 6. Social support among the Caregivers of Persons Living… www.ijhssi.org 50 | P a g e TABLE-8: Comparison of Multidimensional Scale of Perceived Social Support between caregivers of cancer patients underwent surgery and other modes of treatment Variables Surgery (n= 261) Mean (SD) Other treatment(n= 39) Mean (SD) Z Score P value Social support from Significant others 15.87 (7.51) 13.74 (7.40) -1.568 0.117 Social Support from Family 19.66.30) 19.00 (5.17) -0.948 0.343 Social Support from Friend 13.00 (7.04) 13.61 (6.75) -0.564 0.573 Mann-Whitney U test was used to compare the Perceived SocialSupport experienced by the caregivers of cancer patients underwent surgery and other modes of treatment. The result describes that there was no significant difference between the group domains. TABLE-9: Comparison of Perceived Social Support between caregivers of cancer patients whether they had taken treatment or not Variables Treatment(n=49) Mean (SD) No treatment (n= 251) Mean (SD) Z Score P value Social support from Significance others 14.06 (7.98) 15.89 (7.40) -1.655 0.098 Social Support from Family 19.36 (5.97) 19.62 (5.15) -0.106 0.916 Social Support from Friend 12.46 (7.43) 13.19 (6.91) -0.321 0.748 Mann-Whitney U test was used to compare the Perceived SocialSupport experienced by the caregivers of cancer patients had taken treatment and they not have taken treatment. The result describes that there was no significant difference between the group domains. TABLE-10: Comparison of Multidimensional Scale of Perceived Social Support between caregivers according to education Variables Illiterate (n=40) Mean (SD) Primary (n=169) Mean (SD) Secondary (n=36) Mean (SD) Graduate (n=55) Mean (SD) U Score P value Social support from Significance Others 9.60 (4.85) 15.25 (7.18) 17.50 (7.75) 19.76 (7.05) 46.651 <0.001** Social Support from Family 15.00 (5.49) 19.73 (4.73) 21.00 (4.85) 21.49 (5.20) 43.082 <0.001** Social Support from Friend 7.75 (5.55) 12.30 (6.87) 14.80 (6.43) 18.21 (4.84) 58.995 <0.001** ANOVA U test was used to compare the multidimensional scale of perceived social support experience by the caregivers of cancer patient’s qualification. There was significant difference with the graduate caregiver of cancer patients and was greater than other qualification such as illiterate, primary, secondary caregivers of cancer patients which was statistically significant among all domains such as Social support from Significance others (U=46.651, p=<0.001), Social Support from Family (U=43.082, p=<0.001), and Social Support from Friend(U=58.995, p=<0.001).
  • 7. Social support among the Caregivers of Persons Living… www.ijhssi.org 51 | P a g e V. DISCUSSION Comparison between Multidimensional Scale of Perceived Social Support and Dependent Variables Caregiving has been identified as a chronic stressor that places caregivers at risk for physical and emotional problems (Aneshensel, Pearlin, Mullan, Zarit, &Whitlach, 1995). The present study found that Social Support from Friend domain was significantly different with males were greater than females which was statistically significant. According to the National Caregiver Survey, the majority of caregivers (71.5%) are daughters and wives (Stone, Cafferata, &Sangl, 1987).Several theories have suggested that gender differences in caregivers' outcomes exist because, compared with male caregivers, female caregivers face higher levels of caregiving stressors, have fewer social resources, and report lower levels of psychological and physical health. These suggestions have been made, for example, in the gender-role socialization framework (Gilligan, 1982), the gender-role expectation framework (Barusch&Spaid, 1989), and in theories of labor marked segregation and household labor (Ross, 1987). However, only a portion of the available studies have found empirical support for gender differences in caregiver variables (Yee & Schulz, 2000). In contrast, it has been suggested that observed gender differences in caregiver health merely reflect gender differences in general well-being rather than caregiving-specific factors (e.g., Vitaliano, Zhang, &Scanlan, 2003). Mann-Whitney U test was used to compare the Social Support experienced by the single and married caregivers with cancer patients. Social support from Significance others and Social Support from Friend was significantly differs with single caregivers were greater than married caregivers which was statistically significant. This study result matched with previous research done by Sabire (2013). Single caregivers had higher MSPSS scores than the married, all differences being statistically significant. This could be Single caregivers had higher MSPSS scores than the married. Single persons may have fewer responsibilities, while married caregivers have to cope with their family's problems in addition to those of their patients. The current study also found that Social support from Significance others domain was significantly differs with urban caregivers were greater than rural caregivers which was statistically significant. The rational reason could be for this finding is rural people are less likely to be employed than their urban counterparts, so as they are poor in economically and trying to meet the basic needs it is difficult for them to establish social relationship and that lead to poor availability of support from community. This study also found significant difference with the person’s heard about cancer caregivers were greater than person’s not hearing about cancer. It was found among all the domains such as Social support from Significance others, Social Support from Family, and Social Support from Friend. And there was significant difference with the graduate caregiver of cancer patients and was greater than other qualification such as illiterate, primary, secondary caregivers of cancer patients which was statistically significant were found among all domains such as Social support from Significance others, Social Support from Family, and Social Support from Friend. This study result matched with Sabire (2013). In this study the author found that those who studied graduate scores are directly related to it. This may indicate the importance of education in coping with problems. Our study also found a positive correlation between education level and income level. Well- educated caregivers usually have higher income levels. Their social support networks and their ability to access information may be better. Previous studies have reported that caregivers with a higher level of education have more extensive social network; a correlation with lower caregiver burden was also established. VI. CONCLUSION In conclusion, The Results suggest that there were poor social support found in caregivers of married, female, belong to rural domicile, illiterate, and, caregivers who were not heard about the treatment of cancer. Family caregivers of patients with cancer need stronger support in order to improve their social support. In the light of all these findings, in order to help the care givers, they should be informed about the potential burden and consequences of the care giving process and adaptation of caregivers into care processes should be monitored closely. Throughout this process, the assessment of social support systems in coordination with care givers may provide effective results in enhancing caregivers’ awareness on this issue. As another solution, it is deemed necessary to provide professional consultancy services to caregivers on the issue of social support and encourage them to receive such services. Support by professional medical staff appears to be very important for permanent family-member caregivers, especially so if they are over 50 years old, female, married, women, with a low educational level, a spouse of the patient cared for, providing care for four years or longer, or caring for a dependent patient. It is essential that the needs of caregivers, as well as their health status and sources of support, should be identified in accordance with the holistic approach, that particular plans should be made to reduce the burden of caregiving and that these plans should be monitored regularly. Being in constant communication with other family members may decrease problems. Discussing problems with nurses will allow caregivers to improve family-internal communication, identify needs and adjust to a disease that keeps
  • 8. Social support among the Caregivers of Persons Living… www.ijhssi.org 52 | P a g e progressing and changing. Sharing caregiving experiences in family meetings may be beneficial and relaxing for caregivers. Motivating the social support networks and encouraging caregivers to make use of these should prove helpful in coping with the problems of patient care, helping the caregivers adapt to their roles and providing relief from isolation. Sharing news, interacting the friends and neighbors, discussing problems and feelings may all help relieve the stress of caring for a patient. Providing social support to caregivers will decrease the use of nursing homes, which have very high costs. Acknowledgements: This study is funded by ICSSR (Indian Council of Social Science Research) New Delhi. REFERENCES [1] Adejumo, A.(2009) Influence of social support, depression, and self-esteem on burden of care among caregivers of oncology patients. World Hospital Health Survey.45(3):19-21. [2] Ardahan M (2006). Social support and the nursing. J Ataturk University School of Nursing. 9, 68-75 (in Turkish). [3] Barusch, A. S., Spaid, W. M. (1989). Gender differences in caregiving: Why do wives report greater burden. The Gerontologist, 29,667-676 [4] Choi HK. Cultural and noncultural factors as determinants of caregiver burden for the impaired elderly in South Korea. Gerontologist. 1993; 33: 8-15. [59] Pinquart M, Sörensen S. Gender differences in caregiver stressors, social resources, and health: An updated mata-analysis. J Gerontol. 2006; 61: 33-45. [5] Fletcher,B.S et al., (2009)Trajectories of Fatigue in Family Caregivers of Patients Undergoing Radiation Therapy for Prostate Cancer,Research Nursing Health. 2009 Apr; 32(2): 125–139. [6] Gilligan, C. (1982). In a different voice. Cambridge, MA: Harvard University Press. [7] Hasson-Ohayon I, Goldzweig G, Braun M, Galinsky, D. (2010). Women with advanced breast cancer and their spouses: diversity of support and psychological distress. Psychooncology. 2010 Nov;19(11):1195-204. [8] Keller BK, Magnuson TM, Cernin PA, Stoner JA, Potter JF. The significance of social network in a geriatric assessment population. Aging Clin Experiment Res. 2003; 15: 512-517. [9] Kuscu et al., (2009). The association between individual attachment patterns, the perceived social support, and the psychological well-being of Turkish informal caregivers,Psycho-Oncology 18(9):927-35. [10] Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stres process: an overview of concepts and their measures. Gerontologist. 1990; 30: 583-594. [11] Ross, C. E. (1987). The division of labor at home. Social Forces, 47,816-833. [12] Sabire, Y. (2013) The relationship between care burden and social support in Turkish Alzheimer patients family caregivers: Cross-sectional study: Journal of Nursing Education and Practice, 2013, Vol. 3, No. 9 [13] Stone, R., Cafferata, G. L., Sangl, J. (1987). Caregivers of the frail elderly: A national profile. The Gerontologist, 27,616-626 [14] Vitaliano, P., Zhang, J., Scanlan, J. M. (2003). Is caregiving hazardous to one's physical health? A meta-analysis. Psychological Bulletin, 129,946-972. [15] Yee, J. L., Schulz, R. (2000). Gender differences in psychiatric morbidity among family caregivers: A review and analysis. The Gerontologist, 40,147-164.