Background to the Study
Despite advances in treatment and care, cancer remains a devastating chronic disease for patients and their families. The International Union against Cancer (UICC) Cancer Congress (2008) reports that:
“Cancer is the second leading cause of death worldwide, cancer kills more than malaria, AIDS and tuberculosis combined, there are more than eleven (11) million new cases and close to eight (8) million deaths worldwide per year due to cancer and by 2030, this will increase to almost sixteen (16) million cases and around eleven point five (11.5) million; also about twenty five (25) million people worldwide are living with cancer”.
The World Health Organization (2010) International Agency for Research on Cancer, 2011 & FMOH (2007) report that cancer is one of the leading killers of Nigerians and it has become a major public health problem, but its burden in Nigeria is empirically not fully known due to underreporting of cases, lack of appropriate diagnosis, limited access to care, differences in technical manpower and infrastructure as well as quality of data systems. The report also states that “cancer is a crisis for the person diagnosed with cancer and for the family”. In Nigeria, cancer and HIV/AIDS are two important chronic diseases associated with severe distress before eventual death. Cancer is also the leading cause of death, both in developed and developing countries (Lyon, 2009; Obalua, 2010).
In the year 2010, it was projected that cancer will constitute about 20% of the disease burden in Africa; but global cancer rates could increase by 15 million new cases by the year 2020 (WHO, 2012). The report also declared that cancer rate is set to increase at an alarming rate globally, with increased burden of caregiving.
The predicted sharp increase in new cases – from 10,000,000new cases globally in 2000 – 15,000,000 in 2020 will mainly be due to steadily aging populations in both developed and developing countries, current trends in smoking prevalence and the growing adoption of unhealthy lifestyles. Glajchen (2008) opined that the rising incidence rates of other emerging cancers in Africans such as breast and prostrate cancers and HIV/AIDS – associated malignances present new challenges in prevention and treatment for health care providers, researchers, policy makers and also create terrible burden to cancer caregivers. It has also been reported that over 75 percent of cancer cases occurred in low-and middle-income developing countries like Nigeria where resources available for prevention, diagnosis and treatment are limited or non existent (O’Neil, Marconi, Surapruik & Blum, 2010). It is expected that by 2030 the number of deaths will rise to 11.5 million (FMOH, 2008). WHO (2008) reported that 3.47 million Nigerians are already with cancer, while South Africa, America, UK, and China have 2.56 million, 1.7 million, 1.3 million and 2.2 million persons living with cancer respectively.
The trend towards shortened hospital stays and outpatients or home care implies that the burden of caring for chronically ill patients (including terminally ill patients) is increasingly falling on their family members (Ubalua, 2010). McCorkle and Solanke (2006) remarked that the location of care for the oncology/seriously ill has quickly changed from the hospital (once the primary setting for care) to the home. Cancer caregiving at home often done by a family caregiver can be very stressful, as many home care recipients require help with activities of daily living and many have memory or other additional problems. Caregiver burden is thus a condition related to many family caregivers globally (Zarit, 2006). It is the physical, emotional, social and financial problems experienced by family member caring for physically and/or mentally/terminally ill patient (Grater, 2005; Asuquo, 2007). Caregivers’ perception of burden in this context is the feelings, needs, difficulties, pains or distress experienced by family members caring for a cancer family member at home/hospital. Cancer survivors often suffer from various degrees of permanent disabilities, and sustain impairments that significantly affect their personal, familial and social well-being. Due to its unpredictable nature, cancer often leaves cancer survivors and their caregivers unprepared to deal with its impact on daily life. Often the unprepared caregivers and cancer survivors experience fear, anxiety, fatique and worry about failing health and the possibility of cancer recurrence or death. Caring for a cancer family member in the home can therefore be a burden. The challenges and pressures of family caregiving are a reality of daily life (Hooyman, Gonyea & Montgomery, 2006). Today, family caregivers monitor chronic and sometimes acute medical conditions as well as provide long-term care at home. Estimated million cancer caregivers exist in the south-south of America (National Cancer Institute Report, 2011).
Besides limitations of cancer caregiving, some benefits of caring for the cancer patients have also been reported as follows (Antoni, Lehman, Kilbourn, Boyers, 2010): spiritual growth through prayers to cope with caregiving demands, psychological adjustment in life in terms of becoming stronger and better able to manage stress and problems, provision of social support (becoming a social resource person to meet the social needs of the patients), showing empathy for others (understanding other person’s feelings and experience of the person living with cancer), developing a deeper sense of purpose in life with a greater focus on priorities (values) relating to challenges of cancer caregiving, changes in interpersonal relationships and self-view. There is dearth of information relating to burden and benefits of caregiving to cancer patients treated in University of Calabar Teaching Hospital, Calabar in Cross River State specifically.
Statement of the Problem
Caregiver burden has been reported among many family caregivers globally (Zarit, 2006). It has been observed that today’s family caregivers are the backbone of oncology health care system (Zarit, 2006; Asuquo, 2007; Mui, 2009; Ubalua, 2010;). They monitor chronic and sometimes acute medical conditions, provide long-term care at home and hospital settings, yet the significance of their role, and their own care-related strain and compromised health care are often overlooked. Antoni et al (2010) asserted that although cancer is a crisis for patients diagnosed with the ailment and the family at large, there are unexpressed benefits as perceived by the cancer caregivers (the challenges and pressures of family care-giving are also realities of daily life globally).
However, from the researcher’s oncology clinical experience, cancer patients and caregivers were just discharged home without follow-up visits to evaluate care, and most often with no formal preparation of the informal caregivers. Despite other obligations and responsibilities that characterize their lives, these caregivers sleep under relation’s beds, on bare floors at home and in hospital apparently, there are no diagnostic procedure to identify caregivers burden and the economic impact of family involvement in day-to-day experiences of caregiving to persons with cancer. The researcher has also observed that it is not unusual in to witness oncology relations arguing, crying, sighing and disagreeing among family members on who and where to keep a member or relative living with cancer, who to take them to various tests and treatments especially when each has his/ her own personal agenda or business concerns. Meanwhile, there is death of information on this research in Nigeria and the study location. So the results from the present research will provide valuable data and information that could help the care providers to establish a rapport with caregivers, and provide all forms of support to caregivers to alleviate their caregiving burden.
The pulsating questions are: why these reactions? What are the perceived challenges that deter family members and relations from cancer caregiving? What are the perceived sustaining factors to cancer caregiving in Nigeria and in the University of Calabar Teaching Hospital, Calabar. This research aimed at answering these pulsating questions.
Purpose of the study
The purpose of the study is to investigate the perceived burden and benefits of caregiving among caregivers of cancer patients (stages iii and iv) attending University of Calabar Teaching Hospital, Calabar.
The specific objectives were to:
- assess caregivers’ perceived levels of burden of caregiving to advanced cancer patients attending University of Calabar Teaching Hospital, Calabar.
- identify the various forms of burden experienced by caregivers of advanced cancer patients attending University of Calabar Teaching Hospital, Calabar
- determine the relationship of some demographic variables (gender, age, education) of the caregivers on their perceived burden
- determine the relationship of the functional level of the care receiver (cancer patient) and the caregivers’ perceived burden
- determine the relationship of the duration of care on caregivers’ perceived burden
- elicit the benefits of caregiving to advanced cancer patients as perceived by caregivers
- determine the relationship between the perceived benefits and desire to continue caregiving.
The following research questions address these objectives:
- What are the perceived levels of burden of caregiving to advanced cancer patients attending University of Calabar Teaching Hospital, Calabar?
- What are the various forms of burden experienced by caregivers of advanced cancer patients attending University of Calabar Teaching Hospital, Calabar?
- What is the relationship between some demographic variables (gender, age, education) of the caregivers and their perceived burden?
- What is the relationship between functional level of the care receiver (cancer patient) and the caregivers’ perceived burden?
- Has duration of care any relationship with a caregiver’s perceived burden?
- What are the benefits of advanced cancer as perceived by their caregivers?
- What is the relationship between perceived benefits and desire to continue caregiving?
Significance of the Study
The findings of this study will be of benefit to both caregivers and cancer patients. The identification of burdens of care giving would enhance the institution of suitable measures at reducing them. The provision of adequate information for care givers as a result of the findings of this study would educate the caregivers to improve and enhance the quality of care to the receivers and improve disease outcome. The policy makers will make policies that will ensure good time management/planning and provision of support materials for caregivers to lessen their caregiving burden. The government and non-governmental organizations, health care workers and institutions will equally benefit from this study. Result will inform intervention programmes to reduce burden of care from caregivers e.g. give support to caregivers, educate the caregivers, give them rapport and counseling to establish hospice care and reduce caregivers’ burden. Finally, the findings would provide a source of relevant and reliable resource materials for students, rural communities, experts and many others for further studies.
Scope of Study
This study covered all informal caregivers of advanced cancer patients being treated in the University of Calabar Teaching Hospital. This included caregivers of all stages 3 and 4 cancer caregivers that have taken care of the patient for two months and above. The study was delimited to burden and benefits of caregiving to caregivers of cancer patients. It includes caregivers of both sexes, blood relations and other family members (house helps).
Operational Definition of Terms
1.Caregiver perceptions of burden: Expressed impact of the levels and forms of caregiving workload on the caregivers’ life. In this study, perception connotes various ways caregivers of advanced cancer patients describe and rank their caregiving experience as challenging or gainful (ZBI 22 items).
- Caregiver perception of benefit: The experience of positive consequences of cancer caregiving. Benefits are measured using the researcher adapted and modified 17-item benefit finding scale developed by Antoni et al (2010).
- Caregivers: Refers to any unpaid persons which includes blood relatives, friends and housekeepers that provide a broad range of continuous assistance in performing activities of daily living (ADL) to cancer patients for at least two months at hospital care setting, home or community. In this work, the terms informal caregivers is used interchangeably with family caregivers.
- Caregiving: The act of assisting advanced cancer patients to perform activities of daily living.
- Caregiver Burden: A term used to describe the physical, social, financial and psychological impact of caregiving on the caregivers’ life as perceived by the caregiver. Caregivers in this study is assessed using the Zarit Standardized Scale (Zarit, 2008). It comprises of: Physical – bodily structures, psychological – functioning, social – interactions, financial – funds.
6. Cancer patient: This refers to a client or person with histological diagnosis of cancer at “advanced cancer stages 3 and 4” receiving medical care