A

SYNOPSIS ON

SOCIAL CHALLENGES OF CANCER SURVIVORS AND THEIR CAREGIVERS: A

SOCIOLOGICAL STUDY OF URBAN LUCKNOW

DEPARTMENT OF CSSEIP

(CENTRE FOR THE STUDY SOCIAL EXCLUSION AND INCLUSIVE POLICY)

JAWAHARLAL NEHRU UNIVERSITY , NEW DELHI

Presented by : KETAN SHUKLA

Email : [email protected]

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INTRODUCTION
Health is a basic need of human to perform their socio-economic activities well in order to
make their contribution in smooth running of the society. If humans are healthy only than
they can give their best to the society otherwise society will place them to the margins.
Health is not merely absence of diseases in the human body but it has other social,
psychological, emotional and spiritual dimensions. If a person is feeling socially,
psychologically, emotionally and spiritually well and balanced only then he/she can be
considered healthy.
According to world health organization (WHO) health is state of complete physical, mental
and social well-being, not merely the absence of disease or infirmity. Today, three types of
definition of health seems to be possible and are used. The first is that health is the absence of
any disease or impairment. The second is that health is a state that allows the individual to
adequately cope with all demands of daily life. The third definition states that health is state
of balance, an equilibrium that an individual has established within himself and between
himself and his social and physical environment.
There are many diseases which not only affect the human body but also have socio-
psychological and economic consequences over the patients and their families.Cancer is such
a disease it affects the patients and their families in each dimension of their social life. Cancer
is an incurable disease, medication and surgery can only increase the life span of the patients
but the quality of life cannot be improved by medical treatment. Patients have responsibilities
in the home, the workplace and recreationally. A cancer diagnosis may threaten any one of
these arenas resulting in a range of potential social problems. There may be complex
interactions between social problems which are a direct result of the cancer and its treatment
and those social problems which are an underlying reflection of the life, social status or
economic status of the individual.(Wright et al. 2002) Moreover, the family members and
caregivers of the patient has to face social-emotional trauma with increasing economic
burden. Cancer is a long-term disease, when the disease converts into illness it affects the
individual but the moment it become sickness it affects all the people associated with the
patient and became a stigma for the victim as well as the near and dear ones of the victim.
There is a general belief among the people that world is fundamentally just and the diseases
like cancer are the kind of punishment for the victim and their family because of some bad
deeds of victims and their family. Many forms of cancer are visible over the body like skin
cancer, mouth cancer…. etc. which can be easily seen by the others. These visible type of
cancer causesof discredited stigma. But there are many forms of cancer like blood cancer,
cancer in internal organs of the body which are not visible. The patient and the significant
others related to patient try to hide the information about such kind of cancer which are not
visible to others, because they have a feeling of discreditable stigma related to cancer.
In medical terminology cancer is defined as a group of diseases that involves abnormal
growth of cells with the potential to invade other organs too and cause malfunctioning of
those organs, which leads towards organ damage. But its socio-psychological consequences
create abnormalities and difficulties in the personal life of cancer survivors and their

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caregivers. The daily life routine of a person got change drastically after the diagnosis of
cancer in his/her body,the caregivers of cancer survivors also have to make adjustment with
their daily life routine. There are many difficulties faced by cancer survivors at personal
level, grief the feeling of loss of health and being depend on others, because of long-term
effect of cancer and its uncertain duration of treatment patients got depressed, the cancer
survivors who have experienced some kind of disfigurement or major changes in their
physical appearance because of surgery as in case of mouth cancer , breast cancer and skin
cancer suffers of lack of self-esteem and it negatively affect their desire for social interaction
and their interpersonal relationship. Cancer survivors who have gone through major surgery
also feels themselves as a burden for family because they became totally dependent upon the
family for their daily life routines. The extra caring behavior of friends and family towards
the cancer patients make sense of illness in the mind of cancer survivors.
Cancer is the second leading cause of death in the world.According to WHO 17 people die
every minute from cancer in the world.As per World Health Organization (WHO) data, if the
incidence of cancer continues to grow at the reported rate, the number of deaths worldwide
from cancer will increase to more than 16.3 million by 2040. Also, 40 percent of deaths from
cancer are preventable according to WHO.Every year world cancer day is observed on 4
February with a particular theme.Theme of world cancer day 2019-2021 is‘I Am and I Will’.
World cancer day is organized by the Union for International Cancer Control (UICC). UICC
was established in the year 1993. Headquarter of UICC is situated in Geneva. It is a
membership-based organization taking care of Cancer around the world and helping in
medical research.
The aim of celebrating World Cancer Day is to reduce the misconceptions about cancer and
to help people in getting the right information about it. There are several myths related to this
disease as people behave with cancer patients as untouchable. Many people think that cancer
is transmitted through touching, using common goods, eating together and doing other daily
life action with a cancer survivor. World cancer day is celebrated to remove these kinds of
social myths. Therefore, people must know how and what type of treatment is given to cancer
patients. Cancer people have all the right to live like a normal person and they must feel self-
respect and should get a normal environment in their home and society.Cancer awareness day
is celebrated on 7 November in India.
Present study will focus on the social consequences of cancer. This study will try to find the
difficulties of cancer survivors in their personal as well as public life. Social and physical
difficulties faced by caregivers of cancer patients will also be investigate in the present study.
Socio-economic condition of the family of cancer survivors will also be understood in this
study.

Statement of the problem

Cancer is an incurable disease its treatment is a lifelong process. Society perceives an
incurable disease and taking a lifelong treatment negatively. People makes many
misconceptions about the cancer survivors and their family. Many people start avoiding
cancer survivors and breaking up their relations with cancer survivors and their family. Such
perspective of society and negative reaction of people towards cancer survivors lowers the
self-esteem of survivors and make them emotionally weak. Cancer survivors faces
discriminatory behavior at their workplace important works like leading a project, handling

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big assignment are not given to the cancer survivors. This kind of discrimination at
workplace demotivates them. Family of cancer survivors faces extra economic burden
because of prolonged duration of treatment as well as mental and emotional trauma. Extra
care is needed for cancer survivors in the family, there should be a person in the family who
can take care of the cancer survivor for twenty-four hours. Sometimes sympathetic behavior
and extra care given by near and dear ones of cancer survivors also irritates them.

Theoretical frame of the study

The research requires a theoretical premise within which the whole enquiry is to be made.
The purpose of a theoretical framework is not to limit the inquiry but to assist in generation
and analysis of data. Some of the theories associated with present studies are as follows-
Social Stigma theory- Social stigma theory was propounded by Ervin Goffman. According
to Goffman social stigma is an attribute, behavior or reputation which is socially discrediting
in a particular way. It causes an individual to be mentally classified by others in an
undesirable, rejected stereotype rather than in an accepted normal one. Social stigmas are
commonly related to culture, gender, race, class, sexual orientation and health.
In the present study cancer survivors are stigmatized by the society for having an incurable
disease and lifelong treatment process. In our society there is common belief among people
that these kinds of diseases are result of some bad deeds of the person and their family.
Functionalist perspective of health and illness- This perspective was developed by Talcott
Parsons. According to Parsons, Illness is a form of deviance that disturbs the social function
of the society. Individual who has fallen ill is not only physically sick but also, he/she has to
adhere with sick role. Sick role is attached with certain rights and obligations. A sick
individual does not remain a productive member of the society.
Cancer survivors have to adhere with rights and obligation of the sick role. Adherence to sick
role makes them feel as an unproductive member of the society. At workplace cancer
survivors have to face discriminating behavior because of the obligation imposed by their
sick role. In the family extra care is given to cancer survivors because of the rights attached to
their sick role, which may make a feeling of being a burden on the family in the mind of
cancer survivors.

Conceptual frame of the study

Cancer- Cancer is a group of diseases involving abnormal cell growth with the potential to
spread to other parts of body and leads to organ damage. Which causes death.
Cancer survivor- An individual is considered a cancer survivor from the time of diagnosis,
through balance of his/her life. According to Macmillan Cancer Support in the UK a cancer
survivor is one who is living with or beyond cancer. There may be three categories of cancer
survivors-
1- Those who have completed initial cancer management and have no apparent evidence of
active disease.
2- Those who are living with progressive disease and may be receiving cancer treatment, but
are not in terminal phase of illness.

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3- Those who have had cancer in the past.

Disease-Disease is any harmful deviation from the normal structural or functional state of the
body. Diseases are generally associated with certain symptoms which are different from
physical injury.
Illness-Illness is a subjective phenomenon in which individuals perceive themselves as not
feeling well and therefore may tend to modify their normal behavior.
Sickness-Sickness refers to the public or social component of ill health, illness is transformed
into sickness when the condition become publicly known through announcement by the
affected person, observation by significant others or professional diagnosis. Sickness is a
social state because it has implication for social role performance and interpersonal
interaction.
Social stigma- Social stigma is the disapproval of or discrimination against a person based on
perceivable social characteristics that serve to distinguish them from other members of the
society. There are two types of individuals facing stigma, one is discredited individual who
have a stigma that is predominantly visible another are discreditable individuals who have a
stigma that is predominantly concealable.

Literature review
Review of literature provides a guideline to understand the different variables related to a
particular research area. It not only provides some knowledge but also guides the researcher
to innovate new dimensions related to area of research. Some of the previous literatures
related to present study are as follows-
A study was undertaken to describe, evaluate and categories the social problems experienced
by cancer patients. Ninety-six adult cancer patients from four different hospitals and cancer
research center of UK participated in the study. This study describes the categories of social
problems as domestic chores, mobility, employment, benefits and finances, mortgages,
pensions and insurance, social and leisure activities and body image. Body image causes
more social and psychological problems than other categories of problems. All categories of
social problems were experienced by all patients but there were differences in experiences on
the basis of age, sex, and treatment stage. Women disclosed more social problems than the
men. The study also found that men rely more on their wives for support whereas women
turn to their family and friends rather than to their husbands. The patients under age of 40
years reported a greater number of social problems than those who are above the age of 40
years.(Wright et al. 2002)
A study was conducted in Uruguay with cancer patients who are in age group of 18 to 75
years. To ensure heterogeneity in socioeconomic status, patients were taken from one private
and three public hospitals in the city of Montevideo. This study has evaluated several
biological, psychosocial, and cultural variables as possible determinants of quality of life of
cancer patients. This study also found that psychological distress exerted a significant
negative effect on the quality of life of cancer patients. (Dapueto et al. 2005)

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 A study of people with facial disfigurement because of surgery was done in the University of
Tokyo Japan. This study aimed to understand the stigma situation faced by people having
facial disfigurement in public life. This study concluded that Stigmatizing situations
occurring in public are common but not significantly associated with decreased psychological
well-being. Although stigmatizing situations instigated by persons close to the disfigured
individual are lower in incidence but are associated with deteriorated psychological well-
being. Avoidance or concealment decreases psychological well-being, while general social
skills and self-assertion increase psychological well-being. Societal efforts to increase general
knowledge and understanding about facial disfigurement among the public is
required.(KONDO and YAMAZAKI 2005)
A total of 101 patients with advanced lung cancer and their spouse caregivers from outpatient
clinics at Princess Margaret Hospital comprehensive cancer treatment center in Toronto,
Canada, were recruited to study the psychological distress among advanced cancer patients
and their spouse caregivers. A total of 38.9% of the caregivers reported significant symptoms
of depression compared with 23.0% of their ill spouses. This study reported that spouse
caregivers of patients with advanced cancer are at high risk of depression. Subjective care
giving burden, caregiver’s attachment orientations and marital dissatisfaction are important
predictors of depression among spouse caregivers of patients with advanced cancer.(Braun et
al. 2007)
A study of 310 caregivers of cancer patients from the National Cancer Center, Korea was
done to assess depression and its predictors among the caregivers of cancer patients. The
study reported that majority of caregivers had high depression scores. Depression was highly
prevalent among cancer patient family caregivers. The predictor for depression is care
burden. This study has suggested that not only the patient but also the caregivers should also
be focused for reducing the depression.(Young et al. 2008)
To analyze the patterns of social interaction experienced by individuals who are facially
disfigured because of cancer. A study was conducted with the patients who were registered at
MD Anderson Cancer Center in Houston, Texas. Patients, who were diagnosed with various
forms of head and neck cancer and underwent facial surgery which caused observable
changes in their facial appearance, were selected for the study. This study has classified
cancer patients with facial surgery into two groups on the basis of their interaction with
strangers and acquaintances. First group is of always comfortable patients who do not
experience problems because of their disfigurement and their inter- action with small and
large groups does not lead to felt stigmatization. Second group is of occasionally comfortable
patients who experience different levels of comfort in interaction. In some situations, they do
not feel stigmatized but other interactions constitute the contexts within which this discomfort
emerges and they feel stigmatized. (Bonanno and Choi 2010)
A study with an objective to investigate depressive symptoms in lung cancer patients and
their identified caregiver argued that a serious illness affects the entire family and not just the
individual with the disease. The data from the study indicates that caregiver’s own emotional
well-being is quite sensitive to patient’s experiences and status. Findings of the study states
that spouse caregivers consistently exhibit higher depressive symptoms than non-spouse
caregivers. Young offspring caregivers who were not married had high degree of burden and
the likelihood of losing the last living parent to cancer. This study suggests that age and

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relationship play an intertwined role in creating depressive symptoms among caregivers of
cancer patients.(Wager 2011)
Cancer related material and psychological financial hardship including medical debt,
problems in paying medical bills, bankruptcy, and worry about paying medical bills, was
studied in the United States. This study concluded that financial hardship was faced by cancer
survivors and especially among working-age cancer survivors. One of four cancer survivors
reported that they have faced material financial hardship and one of three cancer survivors
reported that they have faced psychological financial hardship. cancer survivors of age 18-64
years who were younger, female, nonwhite, and treated more recently and who had changed
employment because of cancer were reported more material financial hardship. Cancer
survivors who were uninsured, had lower family income, and were treated more recently
were reported psychological financial hardship. This study predicted that risk of financial
hardship would increase in the future because of increasing costs of cancer treatment.
(Yabroff et al. 2016)
A study was conducted to assess the impact of cancer on the quality of life of family
members and close friends who provide care for cancer survivors in US.In this study most
caregivers were the patient’s spouse and were employed. Caregivers reported that care giving
was somewhat stressful, but boosted their self-esteem. Depressive symptoms are common
among cancer caregivers. Findings of the study highlight the unique contribution of
caregiver’s depressive symptoms to their physical health decline. To prevent premature
health decline among the caregivers of cancer survivors this study suggests early assessing
and addressing of depressive symptoms among caregivers.(Shaffer et al. 2017)
Internet based survey in Japan studied the degree of social difficulties faced by the cancer
patients and their spouses. This study reported that people aged 39 years or younger than this,
after diagnosis and treatment of cancer has faced difficulties associated with social
relationships, work, academic background, and property. Physical and psychosocial problems
such as interruptions to romantic and intimate relationships, reconsideration of family
planning, infertility, and body image dissatisfaction were also faced by the cancer survivors
and their spouses. In comparison to men who take care of their wives with cancer, women
who take care of their husbands with cancer have high levels of distress, depression and
anxiety, and a low level of mental health. Low physical health score decreased physical
function and loss of physical fitness was also reported among women taking care of their
husbands with cancer. Social problems like low satisfaction in marriage and limited social
support was frequent in women spouses taking care of their husbands.This study suggested
that health care providers should show sufficient concern for both patients and their spouses
particularly young and female spouses.(Takeuchi et al. 2018)
A paper containing review of eighteen articles on the support of cancer caregivers with
health technology was published in the journal of American Society of Clinical Oncology.
The results of review suggest that the use of health technology-based intervention methods in
support of caregivers is still in its infancy. This review shows that there is a current paucity of
technology related to helping caregivers of patients with cancer, as well as a standardized
approach to improve usability and active adoption of developed interventions. Cost of cancer
treatment is increasing day by day in this situation technology-based interventions may help
the families of cancer patients. Use of mobile health technology on the part of health care

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institutions would be helpful for cancer patients as well as their caregivers. (Interven and
Direc 2019)

Research gap
After reviewing the available literature, it is found that most of the researches shows the
health issues and psychological problems faced by cancer survivors and their caregivers.
There is a need to understand the social problems of cancer survivors and their caregivers, so
that they can live a quality life and can contribute in the society.

Objectives of the study

 To study the socio-economic status of the family of cancer survivors.
 To understand the personal and public life experiences of cancer survivors after
surgery.
 To study the daily life experiences of caregivers of cancer patients.
 To review the Government programs related to cancer survivors.

Hypothesis
 Socio-economic status of the family of cancer survivors is declining.
 Cancer survivors have bad experiences in their personal and public life after surgery.
 Caregivers of cancer patients feel extra burden in their daily life.
 Government programs related to cancer survivors are not adequately executed.

Research Methodology
Research design-On the basis of the objectives of the study descriptive research design will
be used. Descriptive research design is a scientific method which involves observing and
describing the behavior of subjects without influencing them anyway. This research design
provides freedom to use both qualitative and quantitative techniques in order to find the data.
In this way this study will be done by collecting booth qualitative and quantitative data
simultaneously using concurrent data triangulation.
Research area–This study will be conducted within the boundary of urban Lucknow.
Target population- Target population for the present study will be the families of the cancer
survivors living within the boundary of urban Lucknow.
Sampling method and sample size- A tentative sample of 60 families will be drawn from
the target population using purposive sampling technique.
Data collection-Most of the data used in the present study will be primary data. The primary
data will be collected using both qualitative and quantitative techniques. Qualitative data will
be collected by conducting in-depth interviews and quantitative data will be collected by

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using interview schedule. Some secondary data may be taken from government reports and
records.
Data analysis-Quantitative data will be analyzed by using statistical techniques by the means
of statistical package for social sciences (SPSS). Qualitative data will be analyzed by drawing
themes out of collected data.
Ethical consideration-Data will be collected with prior consent and permission of the
respondent. The identity of the respondents will not be revealed.

Significance of the study

Present study will try to find out the social impact of cancer, which includes the problems,
challenges and difficulties faced by cancer survivors and their family in the society. Medical
treatment of the cancer only increases the life duration of patients. But in order to provide a
quality life to cancer survivors and to reduce the socio-psychological strain of their family
social consequences of cancer must be known. After understanding the nature and types of
social challenges faced by cancer survivors and their family, this study will try to provide
some suggestions to them to cope up with those challenges. This study will also try to reduce
the misconceptions about cancer and make people aware about cancer.

TENTATIVE CHAPETERS
1- Introduction
2- Research methodology
3- Socio-demographic profile of respondents
4- Cancer survivors at work place and in family
5- Life of cancer survivors after surgery
6- Social and economic challenges of family of cancer survivors
7- Daily life difficulties of caregivers of cancer patients
8- Conclusion and suggestions
References
Appendix

References
Bonanno, Alessandro, and Jin Young Choi. 2010. “Mapping out the Social Experience of
Cancer Patients with Facial Disfigurement.” Health 02(05):418–28. doi:
10.4236/health.2010.25063.
Braun, Michal, Mario Mikulincer, Anne Rydall, Andrew Walsh, and Gary Rodin. 2007.
“Hidden Morbidity in Cancer: Spouse Caregivers.” Journal of Clinical Oncology
25(30):4829–34. doi: 10.1200/JCO.2006.10.0909.
Dapueto, Juan J., Liliana Servente, Carla Francolino, and Elizabeth A. Hahn. 2005.
“Determinants of Quality of Life in Patients with Cancer: A South American Study.”
Cancer 103(5):1072–81. doi: 10.1002/cncr.20870.
Interven, Technology-mediated, and Future Direc. 2019. “Suppor? Ng Caregivers of Pa? Ents

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 With Cancer: A Summary of Technology-Mediated Interven? Ons and Future Direc?
Ons.”
KONDO, Kayoko, and Yoshihiko YAMAZAKI. 2005. “Living with Facial Disfigurement:
Stigmatizing Situations, Coping Strategies and Their Influence on Psychological Well-
Being.” Japanese Journal of Health and Human Ecology 71(4):142–56. doi:
10.3861/jshhe.71.142.
Shaffer, Kelly M., Youngmee Kim, Charles S. Carver, and Rachel S. Cannady. 2017.
“Depressive Symptoms Predict Cancer Caregivers’ Physical Health Decline.”
Cancer123(21):4277–85. doi: 10.1002/cncr.30835.
Takeuchi, Takashi, Kanako Ichikura, Kanako Amano, Wakana Takeshita, and Kazuho
Hisamura. 2018. “The Degree of Social Difficulties Experienced by Cancer Patients and
Their Spouses.” BMC Palliative Care 17(1):1–9. doi: 10.1186/s12904-018-0338-9.

Wager, Maret G. Taraber and Jan F. Stevens. 2011. “基因的改变NIH Public Access.” Bone
23(1):1–7. doi: 10.1002/pon.1696.Depressive.
Wright, E. P., M. A. Kiely, P. Lynch, A. Cull, and P. J. Selby. 2002. “Social Problems in
Oncology.” British Journal of Cancer 87(10):1099–1104. doi: 10.1038/sj.bjc.6600642.
Yabroff, K. Robin, Emily C. Dowling, Gery P. Guy, Matthew P. Banegas, Amy Davidoff,
Xuesong Han, Katherine S. Virgo, Timothy S. McNeel, Neetu Chawla, Danielle Blanch-
Hartigan, Erin E. Kent, Chunyu Li, Juan L. Rodriguez, Janet S. De Moor, Zhiyuan
Zheng, Ahmedin Jemal, and Donatus U. Ekwueme. 2016. “Financial Hardship
Associated with Cancer in the United States: Findings from a Population-Based Sample
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10.1200/JCO.2015.62.0468.
Young, Sun Rhee, Ho Yun Young, Sohee Park, Ok Shin Dong, Mi Lee Kwang, Jin Yoo Han, Hwa Kim
Jeong, Ok Kim Soon, Ran Lee, Ok Lee Youn, and Shin Kim Nam. 2008. “Depression in Family
Caregivers of Cancer Patients: The Feeling of Burden as a Predictor of Depression.” Journal of
Clinical Oncology 26(36):5890–95. doi: 10.1200/JCO.2007.15.

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