“Self sacrifice is a real miracle out of which all the miracles grow.”

Ralph Waldo Emerson

INTRODUCTION:

Care giving is the act of providing unpaid assistance and support to family members who have physical, psychological and developmental needs. More than 50 million people die every year around the world with cancer. Of these 80% of deaths occur in the developing world. Cancer deaths in India contribute to 8% of global cancer mortality. In India, 70 – 80% of cancers are incurable on diagnosis and 6 million people per year are in need of palliative care. Every hour, more than 60 patients die in India from cancer and in pain^1,2.

Terminally ill cancer patients suffer from a number of symptoms toward the end of the life including pain, nausea, vomiting, dyspnea, restlessness, cough, fatigue and depression³. Inadequate symptom control produces suffering and negative effect on the course of illness. A study done among terminally ill patients reported that out of 30 patients, 80% of the patients had pain, 66.7% of them had vomiting, 73.3% had restlessness, 50% had dyspnea and 20% had cough^,4.

Terminally ill patients are unable to meet their needs by themselves and often hospitalized for symptom management. Caregivers are the support person to patient at the end of their life. The caregivers are responsible for providing physical, psychological, economical and social support.

Due to the inadequate health care professionals, unavailability of resources and low economic status, home services are the primary focus of palliative care in India. When the terminally ill patients are cared at home, they need assistance from caregivers for symptom management and meeting their self care needs.

Patients with advanced cancer and their families experience significant distress in all the domains: physical, psychological, social and spiritual. Meyer et al in their study reported that high levels of distress are associated with increased health care utilization. The physical, psychological, social, spiritual and financial impact of caring on primary caregiver is considerable and often negative.

The authors of several studies reported that caring for a person dying with cancer may be associated with physical problem such exhaustion, fatigue, sleeplessness and weight loss. Also experience psychological symptoms such as depression, reduced self esteem, feeling of isolation and anxiety. They are often confronted with social burden resulting in restriction of time, disturbances of routines, diminished opportunities for leisure activities and loss of income.

38.9% of caregivers of cancer patients reported symptoms of depression. 41% to 62% of the caregivers of advanced cancer patients experienced high level of psychological stress comparing to 19.2% of general population. The high distress was significantly associated with age and the patients’ symptoms.^5,6

The earlier personal interactions with terminally ill cancer patients and their primary caregivers made the investigator to realize, the need for assessing the burden and coping of caregivers. So the investigator is interested in this study.

The aim of the study is to assess the level of burden and coping among caregivers of terminally ill cancer patients admitted in selected hospital, Kanyakumari District, Tamilnadu.

METHODOLOGY:

A quantitative approach with descriptive research design was adopted for the study.

Setting:

The study was conducted in International Cancer Center, Neyyoor, Kanyakumari District which is the pioneer institute for cancer treatment in Tamil Nadu. It is a wing of the Kanyakumari Medical Mission Neyyoor, which functions under the Kanyakumari Diocese. Kanyakumari Medical Mission, Neyyoor is a 600 bedded hospital and out of 600 beds, 150 beds are exclusively for cancer patients. This center provides outpatient and inpatient services. In case of terminally ill cancer patients, most of them are seen as out patients and are cared for at home by the family members.

Population:

The population of the study was caregivers of terminally ill cancer patients admitted in International Cancer Center, Neyyoor, Kanyakumari, District.

Sample:

The sample consisted of 50 caregivers of terminally ill cancer patients admitted in International Cancer Center, Neyyoor, Kanyakumari, District.

Sampling Method:

Consecutive sampling was done. Caregivers of terminally ill cancer patients who met the inclusion criteria were selected as samples.

Criteria for sample selection:

Inclusion Criteria:

· Caregiver whose patient was terminally ill.

· Caregiver who can understand and speak Tamil.

· Caregiver who is willing to participate in the study.

Measures:

The tool consisted of three sections. Section I addressed the socio demographic variables of caregivers of terminally ill cancer patients. Section II addressed Zarit Burden Interview. Zarit Burden Interview is the most widely referenced scale in studies of caregivers’ burden. It has 22 statements. The caregiver of terminally ill cancer patient was asked to state his\her opinion as never, rarely, sometimes, quiet frequently and nearly always. The statements were scored as follows: 0-never, 1- rarely, 2- sometimes, 3- quiet frequently and 4- nearly always. The total attainable score was 88 and interpreted as follows:

No - 0 – 20

Mild Burden - 21- 40

Moderate Burden - 41- 60

Severe Burden - 61– 88

Section III addressed Caregiver’s coping interview schedule. It has 30 statements. The caregiver of terminally ill cancer patient was asked to state his\her opinion as never, rarely, sometimes, quiet frequently and nearly always. The statements were scored as follows: 0-never, 1- rarely, 2- sometimes, 3- quiet frequently and 4- nearly always. The total attainable score was 120 and interpreted as follows:

Minimal coping - 0 – 40

Moderate coping - 41- 80

High coping - 81- 120

Validity and Reliability of the Tool:

The content validity of the tools was established by submitting the questionnaires to 7 experts in Nursing, Medical and Statistical field. Inter rater reliability was done to check the reliability of tool. Pilot study was done to find the feasibility of the study.

Protection Of human subjects:

The study was conducted after getting approval from dissertation committee of Christian College of Nursing, Neyyoor. Written permission was obtained from the Head of the Department of International Cancer Center, Neyyoor, Kanyakumari District. Oral consent was obtained from the primary caregivers of terminally ill cancer patients after explaining the purpose of the study.

Data Collection Procedure:

The data were collected for 5 weeks. 50 caregivers of terminally ill cancer patients were personally interviewed with prepared interview guide. Each day the researcher interviewed 2 to 3 caregivers based on inclusion criteria. The interview lasted for 30 minutes. After explaining the purpose of the study, oral consent from the caregiver of terminally ill cancer patient was obtained. The data were collected using a interview guide. The caregiver was asked to state never, rarely, sometimes, quiet frequently and nearly always questionaire and scoring was done according to scoring procedure. The gathered data were analyzed and interpreted in the light of objectives.

RESULTS:

Majority of caregivers were females (64%), usually spouses or daughters in law. Forty six percent were above the age of 50 years. Most of them were daily wages.

Fig I. Overall caregivers’ burden

Caregivers’’ burden:

The overall caregivers’ burden of terminally ill cancer patients is presented in Fig:1. Thirty eight percent of the caregivers had moderate burden and 32% had severe burden. There was significant association between caregivers’ burden and demographic variables such as income, relationship with patient and occupation.

Caregivers Coping:

The overall caregivers’ coping of terminally ill cancer patients is presented in Fig:2. Twenty two percent of the caregivers had minimal coping and 78% had moderate coping. Ther was no significant association between caregivers’ coping and demographic variables.

Fig.II.Caregivers’Coping

Correlation between caregiver burden and coping:

There is negative correlation between caregivers burden and coping (-.6). It shows that when caregivers’ burden increase, the coping level decrease.

LIMITATIONS:

The study was done only for five weeks. The finding has limited generalizability because this study was regional and a small ample was obtained. This study suggests the need for further research to complement these limitations.

CONCLUSION:

In conclusion, the study findings reveal that caregivers of terminally ill cancer patients have moderate to severe burden and moderate coping. Also there was negative correlation between caregivers’ burden and coping. It is the responsibility of the nursing professionals to help the caregivers to cope effectively to reduce caregivers’ burden through strategies such as meditation, relaxation techniques, counseling and support groups.

REFERENCES:

1. Nelson R. India: Cancer Incidence increasing, Mortality High. Lancet Oncology. 2014. April issue. ( Abstract)

2. Kirti B. Cancer Scenario in India. Daily Excelsior. 2/11/2014

3. Dobratz MC. Patterns of advanced cancer pain in Home Hospice patients. Cancer Nursing. 2001; 24(4): 294-298.

4. Chellappan et al. Can Symptom Relief be Provided at Home for Palliative Care Cancer Patients Receiving Home Care? An Indian study. Cancer Nursing, International Journal for Cancer Care. 2014 37(5): 42-47

5. Laural N, et al. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psycho oncology. 2004; 14:478-491.

6. Hendrix C, Ray C. Informal caregiver training on home care and cancer symptom management prior to hospital discharge: a feasibility study. Oncology Nursing Forum. 2006; 33(4): 793-8.

Received on 15.11.2015 Modified on 03.03.2016

Int. J. Nur. Edu. and Research.2016; 4(2):99-102.

DOI: 10.5958/2454-2660.2016.00022.3