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  Table of Contents  
ORIGINAL ARTICLE
Year : 2017  |  Volume : 54  |  Issue : 2  |  Page : 467-469
 

Role change as breadwinner in cancer caregiving


Regional Cancer Centre, JIPMER, Puducherry, India

Date of Web Publication21-Feb-2018

Correspondence Address:
Dr. C Sivakumar
Regional Cancer Centre, JIPMER, Puducherry
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijc.IJC_211_17

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 » Abstract 


INTRODUCTION: Indian families are known for adopting the role of caregiver naturally when someone in the family falls ill to cancer. Although there were strong family structure and system existed here, now the changing family pattern and structure are challenging the role of cancer caregiving as well. OBJECTIVE: This study analyses the life situation of caregivers of cancer survivors during the course of treatment and attempts to explore the areas of interventions for caregivers themselves. METHODS: A descriptive research design was adopted for the study. A sample of 40 respondents was chosen for the study through purposive sampling technique. RESULTS: Majority of the caregivers were females (75%) and fell into the age group of 35 to 45 years (65%). The education among the caregivers was varying between illiteracy to postgraduation. Majority of 95% of them adapted the dual role voluntarily and 85% of them felt that they were finding it very difficult to cope with the dual responsibility. About 60% of them felt that they would fail in their roles and were not satisfied with their performances dually. CONCLUSION: Adaptation to a dual role involves time factor and as part of care to the caregiver, a guided interaction and orientation towards managing these roles would help them better ways to adapt. Given the scarcity of support system on Indian settings, the caregivers who do dual role have huge responsibility and challenges to deliver quality caregiving and fulfill their other roles as well. It is the duty of the complete health care system to seriously take this into consideration and to act on it.


Keywords: Caregiving, mental health, role change, stress


How to cite this article:
Sivakumar C. Role change as breadwinner in cancer caregiving. Indian J Cancer 2017;54:467-9

How to cite this URL:
Sivakumar C. Role change as breadwinner in cancer caregiving. Indian J Cancer [serial online] 2017 [cited 2019 Jul 16];54:467-9. Available from: http://www.indianjcancer.com/text.asp?2017/54/2/467/225790





 » Introduction Top


Cancer is a disease which is commonly known as a dreadful and terminal illness among the common public. Fortunately, the medical advancement in treating cancer has brought down the overall fear in having cancer and living with cancer. The world is witnessing cancer survivors who have succeeded their lives with a great amount of courage and willpower. To support them and to be with them throughout the journey of cancer, caregivers play an important role in strengthening the lives of cancer survivors.[1] At the same time, they are making them prone to a considerable amount of stress and agony which is sometimes more than what the cancer survivors' experience.[1],[2] When it comes to the economical aspects in cancer like taking over the role of breadwinner of the family along with caregiving is the biggest challenge. Many families are affected when their breadwinners get cancer, and the total family is out of income generation.[3] In this situation, one of the family members is forced to take up the role of breadwinner; unfortunately, in many Indian victims of cancer, it is the caregiver who plays the dual role as caregiver and breadwinner.


 » Methodology Top


The study was carried out among the caregivers of cancer survivors in Puducherry, India. A descriptive research design was adopted for the study. A sample of forty respondents was chosen for the study through purposive sampling technique.

The inclusion criteria were:

  • The respondent should be the primary caregiver of a newly diagnosed cancer survivor
  • The respondent should have taken up the role of only breadwinner after diagnosis of their cancer survivor
  • The respondent should be playing the dual role of breadwinner and caregiver.


The exclusion criteria were:

  • The respondents who are not the only breadwinners
  • The respondents who share their role of caregiving with others


A self-structured interview schedule was made for the purpose of data collection.


 » Results Top


The first part of data collection was having the sociodemographic profile of the respondents. The analysis shows that the majority of the caregivers was females (75%) and falls into the age group of 35–45 years (65%). The education among the caregivers was varying between illiteracy to postgraduation where 45% of the caregivers were having primary school education, and 3% of the caregivers were illiterate. All the caregivers were currently employed, and 35% of the respondents were sharing their role of breadwinning in the family before the diagnosis and treatment of their cancer survivor. The respondents about 60% were in formal employment of salary based, and the rest were in informal earning modes such as self-employed and contracted works. The respondents about 80% belong to urban areas and live in nuclear families.

The second part of data collection focused on the life situation of caregivers and their adaptability to the dual role as caregiver and breadwinner. Among the caregivers, the majority of 95% of them adapted the dual role voluntarily, and the rest were forced to take it up as there were no other options. About 35% of the respondents were sharing the role of breadwinning before the diagnosis of the cancer survivor. Among the respondents, 85% of them were felt that they are finding it very difficult to cope with the dual responsibility. About 60% of them felt that they will fail in their roles and not satisfied with their performances dually. The respondents about 67% of them said that the more than caregiving they have difficulties in other areas of the family only. They also considerably agree that both the roles have a mutual impact in their performances. The majority of the respondents about 95% said that they have no recreation/hobbies in their life and 90% of them said that only 30 minutes to one hour they spend in a day for their own personal care. Almost 90% of them complain poor sleep hours and sleep disturbances. The majority of 95% respondents think that their health is declining and they could make out with symptoms such as body pain, decreased energy, constipation, and poor appetite. The respondents about 80% agree that they require counseling to cope up with the dual role. The majority of 90% of them have a fear of their loved one's death and associated issues in their role of breadwinning. About 15% of the respondents have become addicted to alcohol, Pan Parag, smoking like habits after taking up the dual role.


 » Discussion Top


Caregiving is a unique art and needs a lot of patience and courage to fulfill the expectations from the cancer survivor and other members of the family.[4] When it comes to the dual role as breadwinner and caregiver, the challenges are more and stronger than the anticipated. In this study, as the majority of the respondents showed as females imply that by nature itself women are voluntarily accepting the role change. It is also inferred that the earning abilities of women in Indian settings are much more dormant and when an opportunity arises they reveal it strongly and effectively as potential breadwinners. As the study says that 40% of the respondents are in informal employment in a way reveal the fact that the respondents are unable to take up a regular job or source of income as they have to spend a considerable amount of time in caregiving.[5] Since the cancer survivors are newly diagnosed, they are in a regular treatment period, and the presence of primary caregiver during the treatment becomes essential here.[6] Hence, the caregivers are forced to be with the survivors either to accompany them for treatment or at home care assignments. The study also revealed that some respondents have to resign the regular jobs and took informal jobs to make them adapt to the dual role. Furthermore, two respondents have resigned jobs since it involved frequent official touring and transfers. They also complain that their income also reduced due to this.[7] The study also revealed the growing urbanization and nuclear families. The study definitely agrees the fact that growing nuclear family system is causing gross difficulties in families when a member of family becomes ill or suffers with chronic/terminal illnesses. Although the majority of the respondents have taken up the role voluntarily, the existing family system and the lack of proper supporting systems are forcing here to take up the role. If an alternate support system can be assisted, then the options would vary here. Because of continues assignments and role expectations, the respondents are put in constant stress, and they are finding it difficult to perform either role.[8] The study also revealed the lack of timings spent in recreation by the respondents because of a dual role, and it is due to the demanding needs of cancer survivors and the respondents' necessity to go far work as well. Here, the respondents complain declining health attributing to many symptoms which are psychosomatic in nature only. This underlines the fact that the respondents are experiencing a considerable amount of psychological stress and also the fact that the poor ventilation of those suppressed emotions and feelings.[9] Given the age group of respondents, the families are assumed to be in young generations, and the functioning of the families should be surrounded with children in education or children at the age of higher education.[10] This makes out the huge role of the caregiver who is also the breadwinner to perform multitasking roles besides these two. Hence, it is understandable that the timings spent in overall doing and time left for personal care which is very meager here. The study also revealed the fear among respondents about the death of their cancer survivor who is a spouse in the majority.[11] It is because of the tremendous efforts as a caregiver who puts to save the lives of cancer survivor, and when the prognosis does not match the expectations, they are succumbed to feelings depression, suicidal ideations, dejections, and prone to addictions.[12]


 » Suggestions and Conclusion Top


Cancer has become very common, and the rise of cancer population is steadily growing all around the world. Although there are gross differences in health-care system in one part of the world to the other part of the world, cancer definitely brings common effects in the lives of cancer survivors and their families. Here only the degree of impact varies. The challenges are much harder and difficult to overcome, in cases where the caregivers have to play a dual role. This study was conducted among very common community which has poor access to health-care system and also economically in poor status to afford better health services. Hence, the role of sole breadwinner to take care of a young family is not an easy task and besides the role of caregiver does add enormous stress in it.

The present cancer treatment system does focus only on the cancer survivor, and the light should be thrown widely on the caregiver as well. Although we insist on patients' rights in treatment, practically we should bring it down to the reality and include the caregiver as an active member of the treating team. Unless we know the practical difficulties of patient and the caregiver, adhering to the treatment prescribed will be complicated for them. An equal weightage to the care of caregivers' health should be also the focus of the treatment. The health education is primarily extended to the caregivers in motivating them to structure their dual role and perform. They should be given the inputs to keep them aware of disturbing factors that will adversely affect their health.[13] During the time of stay with patients in the hospital, caregivers should be facilitated with options of short term or part time earning without disturbing the treatment course. There must be ways to handle these issues which are the real challenges in cancer treatment. Hence, a holistic approach is needed not only to treat the cancer victims but also to extend the same to the caregivers to provide a congenial environment for them to actively play the role of caregiver.

Adaptation to a dual role involves time factor, and as part of care to the caregiver, a guided interaction and orientation toward managing these roles would help them better ways to adapt. Some people do adapt so quickly and manage their tasks very well whereas many find it difficult to do so. A self-help group comprising similar caregivers will give lot of strength and abilities to adapt to the dual role. This help group may be done through professionally qualified personnel, and this certainly will address many issues that the caregivers face. Given the scarcity of support system on Indian settings, the caregivers who do dual role have huge responsibility and challenges to deliver quality caregiving and fulfill their other roles as well. It is the duty of the complete health-care system to seriously take this into consideration and to act on it. Unlike other diseases, cancer is one where the holistic health of caregivers also an objective to achieve.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
 » References Top

1.
Wittenberg E, Borneman T, Koczywas M, Del Ferraro C, Ferrell B. Cancer communication and family caregiver quality of life. Behav Sci (Basel) 2017;7. pii: E12.  Back to cited text no. 1
    
2.
Pellegrino R, Formica V, Portarena I, Mariotti S, Grenga I, del Monte G, et al. Caregiver Distress in the Early Phases of Cancer. Anticancer Res 2010;30:4657-63.   Back to cited text no. 2
    
3.
Girgis A, Lambert S, Johnson C, Waller A, CurrowD. Physical, psychosocial, relationship, and economic burden of caring for people with cancer: A review. J Oncol Pract 2013;9:197-202.   Back to cited text no. 3
    
4.
Hagag NG. When Cancer Strikes: A Tribute to the Family Caregiver. Newyork, USA: Nova Publishers; 1999.  Back to cited text no. 4
    
5.
Cameron JI, Franche RL, Cheung AM, Stewart DE. Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 2002;94:521-7.   Back to cited text no. 5
    
6.
Shaffer KM, Jacobs JM, Nipp RD, Carr A, Jackson VA, Park ER, et al. Mental and physical health correlates among family caregivers of patients with newly-diagnosed incurable cancer: A hierarchical linear regression analysis. Support Care Cancer 2017;25:965-71.   Back to cited text no. 6
    
7.
Bakas T, Lewis RR, Parsons JE. Caregiving tasks among family caregivers of patients with lung cancer. Oncol Nurs Forum 2001;28:847-54.  Back to cited text no. 7
    
8.
Reblin M, Donaldson G, Ellington L, Mooney K, Caserta M, Lund D. Spouse cancer caregivers' burden and distress at entry to home hospice: The role of relationship quality. J Soc Pers Relat 2016;33:666-86.   Back to cited text no. 8
    
9.
Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol 2004;2:145-55.   Back to cited text no. 9
    
10.
Wasilewski MB, Webster F, Stinson JN, Cameron JI. Adult children caregivers' experiences with online and in-person peer support. Comput Human Behav 2016;65:14.   Back to cited text no. 10
    
11.
Fronczek AE. A phenomenologic study of family caregivers of patients with head and neck cancers. Oncol Nurs Forum 2015;42:593-600.   Back to cited text no. 11
    
12.
Given B, Wyatt G, Given C, Sherwood P, Gift A, DeVoss D, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum 2004;31:1105-17.   Back to cited text no. 12
    
13.
Kochaki Nejad Z, Mohajjel Aghdam A, HassankhaniH, Sanaat Z. The effects of a patient-caregiver education and follow-up program on the breast cancer caregiver strain index. Iran Red Crescent Med J 2016;18:e21627.  Back to cited text no. 13
    




 

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