RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,
4TH ‘T’ BLOCK, JAYANAGAR,
BANGALORE – 560041
(KARNATAKA)
PROPOSAL FOR REGISTRATION OF
SUBJECT FOR DISSERTATION
SUBMITTED BY :
Mr.LAKSHMIKANTH.M
1 YEAR M.Sc. NURSING
VIVEKANANDA COLLEGE OF NURSING,
B.L. GOWDA LAYOUT, NEAR RTO OFFICE,
BASAPPA MULTI SPECIALTY HOSPITAL,
CHITRADURGA – 577501 (KARNATAKA)
RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,
BANGALORE, KARNATAKA.
ANNEXURE-II
PROFORMA FOR REGISTERATION OF
SUBJECTS FOR DISSERTATION
1
1. / NAME OF THE CANDIDATE AND ADDRESS: / MR.LAKSHMIKANTH.MI yr M.Sc.NURSING
VIVEKANANDA COLLEGE OF NURSING
CHITRADURGA
2. / NAME OF THE INSTITUTION / VIVEKANANDA COLLEGE OF NURSING, BASAPPA HOSPITAL
CHITRADURGA
3. / COURSE OF STUDY AND SUBJECT / MASTER’S DEGREE IN NURSING
MENTAL HEALTH NURSING
4. / DATE OF ADMISSION / 03/06/2011
5. / TITLE OF THE TOPIC:
A STUDY TO ASESS THE LEVEL OF STRESS AMONG THE CARE GIVERS OF HEMODIALYSIS PATIENT IN SELECTED HOSPITALS AT CHITRADURGA WITH A VIEW TO PROVIDE HEALTH EDUCATION ON COPING STRATAGIES.
6. BRIEF RESUME OF INTENDED WORK
6.1 INTRODUCTION:
People have many roles in life such as wage earner, decision maker, professional, and parent. When an illness occurs, the roles of client and family may change. Such a change may be subtle and short term or drastic and long term. Long term changes, however, require an adjustment process, where the client and family often require specific counseling and guidance to assist them in coping with the role changes.
Illness is never an isolated life event. The client and family must deal with changes resulting from illness and treatment. The client and family commonly experience behavioral and emotional changes, as well as changes in roles, body image, self-concept, and family dynamics. Environment, personal behaviors, and psychosocial factors play an interactive role in illness and health. The health care professional can no longer focus only on physical functioning since such situations can lead to stress and conflicting responsibilities, which is usually the scenario with caregivers of patients with chronic kidney Disease.1
The study evidences shows that most caregivers are ill-prepared for their role and provide care with little or no support, yet more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves. A substantial body of research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives. Estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one half of these caregivers meeting the diagnostic criteria for major depression. Caregivers have higher levels of stress than noncaregivers. They also describe feeling frustrated, angry, drained, guilty or helpless as a result of providing care. Caregivers who experience chronic stress may be at greater risk for cognitive decline including loss in short-term memory, attention and verbal IQ.2
A large and growing body of research reveals that providing care for a chronically sick person can have harmful physical, mental, and emotional consequences for the caregiver. As families struggle to care for others, their own health is put in danger. As a result, caregiver health is quickly becoming a public health issue that requires more focused attention from health professionals, policy makers and caregivers themselves to ensure the health and safety of those individuals dedicating their lives to the care of others.3
Increasing appropriate mental health services and medical care for family caregivers are important steps toward addressing caregiver health. Improved recognition and treatment of physical and psychological symptoms among caregivers is a growing health concern and should be considered a public health priority. Keeping family caregivers healthy and able to provide care is a key to maintaining our nation’s long-term care system and, with the aging of the population, this issue will only grow more important in the coming decades. Hence the timely identification of caregivers who are experiencing distress is an important element in the development of clinical programs that address the need for information, support and treatment.
6.2 Need for study
Caregiver stress is the emotional and physical strain experienced by a person caring for someone with a chronic debilitating disease or life-threatening condition. Stress often manifests as criticism or complaints. The impact of providing care for patients with chronic illnesses has been studied for several diseases. Caregiving can be associated with emotional difficulties, such as depression, a variety of anxiety-related symptoms, excess medication use, negative impact on perception of physical health and an impaired quality of life and caregivers who report strain have a higher mortality rate than non-caregiving controls.4 A recent study reported in proceedings of the national academy of sciences in early July, 2003, that care giving can affect negatively the caregiver’s immune system. The stress ofnurturing can damage the caregivers system and could lead to early death. This study was conducted with Alzheimer’s patient caregivers but suggests that the results will apply to caregivers of other patients.5
End stage renal disease (ESRD) is a silent epidemic of 21st century. Its occurrence is universal. Haemodialysis is the most common method used to treat advanced and permanent kidney failure. Haemodialysis imposes a variety of physical and psychosocial stressors that challenge not only the patients but also the care givers.6 An estimated 11-30 million population of United states are suffering from Chronic Kidney Disease and undergoing Dialysis management, In India it is estimated that about 7.85 million peoples are suffering from chronic kidney disease.7
More than 65 million peoples are providing care for the chronically ill, disabled or aged patients in U.S. At an average of 20 hrs per week the caregivers are providing care for loved one for free with an estimated value of $375 billon a year.
The difficulty in developing effective strategies to deal with the expanding population of patients with chronic kidney disease is challenging the resources of the nephrology community. These challenges are greatest for the patients who are unable to provide the necessary treatment for themselves and require a caregiver to assume major responsibility for their treatment. According to USRDS database the 40% of Chronic Kidney Disease patients starting dialysis at the age of 65 have five or more comorbidities, and about 70% of Chronic kidney disease patients starting dialysis at the age of 55 have moderate to severe cognitive impairment.8
The difficulties presented in providing adequate support for patients with Chronic kidney disease, have been emphasized. The difficulties like finding substitutions for or keeping patients from ingesting restricted foods or drinks they preferred; providing emotional support for fluctuating emotions and mood changes because of dialysis; medication management, transportation, adjusting to decrease in social and physical activities impose a substantial stress on those directly responsible for giving care, especially for family members.9
The concept of ‘caregiver stress’ has thus been used to capture this impact. As the patients are unable to perform many tasks associated with Chronic kidney disease management, their family members must assume this responsibility. In addition to the physical burden of performing Hemodialysis and administering medications, caregivers are responsible for getting them to clinic appointments, providing special diets and nutritional supplements. It is indeed remarkable that so few studies have examined how to help the caregivers of Chronic Kidney Disease patients. Certainly the burden of caring for a dialysis patient presents special problems like difficulties in securing transportation to the dialysis center need to be underscored. And, there are major problems with the time to recovery after the Hemodialysis session. One session takes an average of about 6 h for Hemodialysis patients to recover after a treatment, with elderly patients often reporting difficulties until the following day.10
Finally, the caregivers for patients undergoing Hemodialysis must bear the emotional and psychological stress of having a chronically ill patient. They must cope with their own feelings/thoughts, but even more significantly, they must help their patient to cope with their own stress. The caregiver stress increases significantly as functional and cognitive impairments imposed by the chronic disease limit the ability of the patient to care for himself. Anxiety, fatigue, depression, deterioration in family relationships, social isolation and stress can occur when caregivers take charge of caring the patient. This in turn may result in a more negative impact on the emotional and social aspects of caregivers’ lives, leading to the disturbance in the physical and mental health which in turn leads to development of various psychological problems among caregivers.11
Essentially the exploring ways of supporting caregivers can have beneficial effects on the outcomes for both the patient and the caregiver. Identifying family caregivers and monitoring their stress early to optimize the well-being of the caregiver have been emphasized. Discussing coping skills can improve caregiver quality of life even in the difficult environment of end-of-life care. Psychological intervention can have significant, positive effects on caregiver’s stress and improve their satisfaction with their role.12-14
A phenomenological study was conducted to investigate the biopsychosocial impact of ESRD on dialysis patients and their partners. 44 participants were interviewed separately (22 patients and their partners) by way of two open-ended questions, and multiple themes were identified from verbatim transcripts. The results of this study indicate that nurses need to recognize and respond to the tremendous emotional impact that chronic illness and its treatment can have on families in an era where it is possible to sustain life for years with the use of life support technology.15
In the Dialysis center of District Hospital Chitradurga, nearly 50-60 patients withchronic kidney disease, visit along with their caregivers for frequent hemodialysis and 3-4 get hospitalized for close monitoring.
Though there is significant high level of stress among care givers of hemodialysis patients and the research studies were very few, futher research studies are needed to evaluate and determine the level of stress especially among the caregivers. Also the caregivers are lagging behind in terms of knowledge of coping strategies to combat with increasing stress.
As the investigator has worked as a nurse in the dialysis unit have seen innumerable caregivers expressing their stress regarding the care of hemodialsis patients.
Considering these facts, the investigator felt it as a strong need to study the level of stress among the caregivers of hemodialysis patients and to give health education regarding the coping strategies.
6.3 Review of Literature
Reviewing the existing literature is a critical step in the research process. It helps to develop an insight into the area of investigation and direct the researcher to develop a plan and gives strong foundation base. Hence the researcher reviewed the studies related to stress and coping of caregivers.
The literature review for the study has been organized under the following headings:
1. Studies related to the effect of caregiving on stress among caregivers of Hemodialysis patients.
2. Studies related to the impact of coping strategies in reduction of stress among the caregivers of Hemodialysis patients.
1. Studies related to the effect of caregiving on stress among caregivers of Hemodialysis patients.
A study was conducted to assess burden on caregivers as perceived by Hemodialysis patients in Frequent Hemodialysis Network trials (mar 18, 2011) by Suri RS in Western Ontario, London the Cousineau Percived Burden scale and a 10-question scale previously developed in hemodialysis patients. Associaltions between baseline burden score and prespesified variables were evaluated using multi variable linear regression. The results showed that out of 412 participants, 236(57%) are unpaid caregivers and are having higher comorbidity (Charlson mean 1.8 ± 1.8 versus 1.2± 1.7, p < 0.001), higher beck depression scores (mean 16 ±11 versus 12 ± 9, p < 0.001), physical health composite scores (median 33 versus 41, p < 0.001). This study concluded that the most of Hemodilaysis patients in Frequent Hemodialysis Network trails perceived substantial burden on their unpaid caregivers.16
A Cross-sectional multicentric study was conducted in Segovia, Spain by Alvarez-Ude F, with the aim to evaluate the health-related quality of life and burden on family caregivers of chronic dialysis patients and to analyze which factor associated with it. Zarit Burden interview and Duke-UNC Functional social support questionnaire was conducted on 221 patient/caregivers pairs. The results showed that the physical and mental health of caregivers of dialysis patients were slightly worse than the Spanish population of same age and gender. The primary caregivers of dialysis patients with poor health related quality of life, experienced a higher burden and had a higher risk of clinical depression.17
A study was conducted in Paulo, Brazil by Belasco AG(2002) with an aim to assess the perceived burden and health related quality of life, and investigate factors influencing this burden. The caregiver burden scale (Score range, 1 to 4; higher values indicate a greater effect) on 100 hemodialysis patient and their caregivers with the age of 46±2 years and of low socioeconomic level. Their main relationship with patients were wives(38%) and sons or daughters (27%) for more than 4 months was assessed. Care givers mental health and validity were the most affected emotional dimensions (mean scores, 64.4 ± 1.8 and 66.6 ± 1.7, respectively). The results shown that the caregivers of hemodialysis patient may experience a significant burden (2.07 ± 0.05) and an adverse effect on their quality of life. Emotional aspect of caregivers and patients are important predictors of burden. Social support and psychological interventions considered to improve caregivers life and patient outcomes.18
Cross sectional study on effect of illness on the family and female spouse of Chronic Kidney Disease patients on hemodialysis, conducted at St.John’s Medical College Hospital on thirty female spouses. Family burden scale and anxiety scale were used to quantify the burden and anxiety. Family burden was rated as severe by 96.7% and the inter correlation matrix in the sub domains of family burden namely financial burden, disruption of routine activities, family physical health, disruption of family interactions and total burden when analyzed, reached statistical significance at P<0.05 for each of the characters. Anxiety of severe to moderate degree was reported by 80% of the subjects.19
A study conducted in University ofsouthern California on caring for family members with chronic physical illness, indicated that stress related variables as possible predictors influencing caregivers quality of life included patient and caregiver characteristics, stressors, stress appraisal, stress coping methods and social support.20