Submitted By
Mrs. Lovera SureshMrs. Juliana Lobo
Head of the Department1st year M. Sc. Nursing
Paediatriac NursingPaediatric Nursing
2007-09
Sarvodaya College of Nursing,Sarvodaya College of Nursing, Bangalore – 560 079 Bangalore – 560 079
RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,
BANGALORE, KARNATAKA
PROFORMA FOR REGISTRATION OF SUBJECT FOR DISSERTATION
1. / NAME OF THE CANDIDATE & ADDRESS / Mrs. Juliana Lobo1st year M. Sc. Nursing
Sarvodaya College of Nursing,
11/2, Agrahara Dasarahalli,
Magadi Main Road,
Bangalore – 560 079
2. / NAME OF THE INSTITUTION / Sarvodaya College of Nursing,
Bangalore – 560 079
3. / COURSE OF STUDY AND SUBJECT / 1st year M. Sc. Nursing
Paediatric Nursing
4. / DATE OF ADMISSION OF COURSE / 01-06-2007
5. / TITLE OF THE STUDY / “A Study To Assess The Stress Among Care Givers Of Physically Challenged Children In Selected Institutions, Bangalore.”
6. / BRIEF RESUME OF THE INTENDED WORK
6.1 Introduction
6.2 Need for the study
6.3 Statement of the problem
6.4 Objectives of the study
6.5 Operational definitions
6.6 Inclusion & exclusion criteria
6.7 Assumptions
6.8 Review of related literature / Enclosed
Enclosed
Enclosed
Enclosed
Enclosed
Enclosed
Enclosed
Enclosed
7. / MATERIALS AND METHODS
7.1 Source of data: Data will be collected from care givers of physically challenged children in selected institutions, Bangalore.
7.2 Method of data collection : Self administered questionnaire
7.3 Does the study require any investigation or intervention to be conducted on the patient or other human beings or animals?
NO
7.4 Has ethical clearance has been obtained from your institution?
Yes, ethical committee’s report is here with enclosed.
RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,
BANGALORE, KARNATAKA
PROFORMA FOR REGISTRATION OF SUBJECT FOR DISSERTATION
1. / NAME OF THE CANDIDATE & ADDRESS / Mrs. Juliana Lobo1st year M. Sc. Nursing
Sarvodaya College of Nursing,
11/2, Agrahara Dasarahalli,
Magadi Main Road,
Bangalore – 560 079
2. / NAME OF THE INSTITUTION / Sarvodaya College of Nursing,
Bangalore – 560 079
3. / COURSE OF STUDY AND SUBJECT / 1st year M. Sc. Nursing
Paediatric Nursing
4. / DATE OF ADMISSION OF COURSE / 01-06-2007
5. / TITLE OF THE STUDY / “A Study To Assess The Stress Among Care Givers Of Physically Challenged Children In Selected Institutions, Bangalore.”
6. Brief resume of THE intended work
6.1 Introduction
“This is the humble most introduction of our life. Reality is in our tears and acting in our laughter.”
Stress is the reaction of the mind and body to change. It is like electricity, a very good servant but a very bad master. It is often equated with tension, anxiety, worry and pressure in human life. Stress is a response to an environmental demand. Stress usually is a product of stressors. Stressors are agents or factors that challenge the adoptive capacities of an individual placing a strain upon the person. It tends to strain or distort the body and is a cause of mental fatigue. Stressors arise from variety of sources such as environmental, physical, psychological, emotional and sociological. Some of the stressors which we often experience in our daily life are reaching office in time, family environment. Stressors are unique affect every individual in different ways. For example a person who likes to be socially aloof, for him going for family function will be a stressor where as for a social person it would be a happy experience.
The way an individual deals or copes with a stressor depends on various factors such as an individuals, personality, his perception, potentials, family support etc. The reaction of an individual to a stressor will affect the level of stress experienced and this in turn will affect coping of the individual towards stress.
Life would be simple indeed if our needs were automatically gratified. As we know, many obstacles – personal, physical, social, emotional and environmental prevent this ideal situation. Such obstacles place adjustive demands on us and can lead to stress.
Selye defined stress as the non specific response of the body to any demand made upon it1. David states that the stressor is the environmental demand and stress may come from variety of sources. Stress can be measured by identifying and evaluating the cause of the stress, by studying the behavioural reactions of a homogeneous group to different stressors, and by identifying commonalities between descriptions of feelings indexed by stressors in an interview or questionnaire2.
Luckman quotes, “Among the day to day problems, triumphs and events we all experience, there is an infinite range of stressors. From bitter coffee at dawn to unresolved problems at dusk, from great personal achievements to life’ strategies, all of us must cope with a constant mix of stressful events”3.
This equilibrium is hampered when an individual undergoes crisis. A crisis related to a turning point or a time of difficulty or distress. Individual develops unique patterns of coping strategies that reflect even within the constant change in behaviour over time and place when an individual is unable to cope with the crisis, he gets affected physically, psychologically, socially.
Caregivers need to have accurate, up-to-date information given to them early and in language they can understand since they do not hear all that is said the first time it is told to them. They need outlined and what will be expected of them. Caregivers often misinterpret information and so require repeated explain, interpret and clarify information and answer question. Most of the caregivers have little or no knowledge of basic anatomy and physiology. Therefore, pictures and other visual aids can be used. Selectively to explain both normal and deviant structures, special feeding and positioning techniques need to explained and demonstrated. Anticipatory guidance regarding problems that are peculiar to each abnormality reduce apprehensive and stimulate the parents to institute preventive measures and make alert observations.
Drew says, “Nursing is a humanitarian service, the patients as well as relatives satisfactorily needs to be considered as one of the valid criteria to assess the quality of nursing care received by patient”4.Garland had stated that, “relatives and friends can be a real asset in the ward if allowed to become involved in the care of the patient”5.
Nurses must anticipate that a crisis is likely if they do not provide support anticipatory guidance can be an effective strategy to reduce the source of stress and in some instances, avert full blown crisis.The first step in stress management is dealing with the problem by identifying its source. After identification of the source of stressors deal with the stressor. Recognising stressors and acting upon allowing them to grow, is essential to mental and physical health.
Children are very special people in the lives of their mothers. Many of the mother concerned with meeting the needs of their children, giving them nurturance, love, protection and support. Caregivers experience stress because of child’s sickness, owing to which child is disabled.
Lack of information regarding deformity, surgery required, further management of such condition and caregivers role, may act as stressors which cause stress in caregivers. If the nurse is able to identify various areas of stress experienced by these caregivers she can identify the information needs of caregivers. This will help her to plan comprehensive nursing care for child and also satisfy caregivers needs. Meeting caregivers needs will reduce anxiety. There will be better acceptance of the child by the family. also it will help to prepare the family for further rehabilitation programme.
It is not surprising that the physically challenged fight two battles, the battle to overcome the limitations imposed by their physical condition and the battle to be accepted by others. Physical disability in itself may not be as bad physical experience as the social one, especially in those cases where the handicap is visible. It is only recently that the ‘disability’ has been termed as a ‘challenge’ impediment for an individual. The bias against disability is relieved in the terminology locally used for referring to these individuals, which are often derogatory and limiting. Such individuals grow up they ‘cannot do’ whereas when the disability is offered as a ‘challenge’ their outlook towards life changes.
Physical disability is common experience of everyday life. According to WHO disability means any restriction or lack of ability to perform any activity in the manner within the range considered normal for a normal being. Physically handicap children are defined as those whose non-sensory physical limitation or health problems interfere with the school attendance or learning to such an extent that special services, training equipment, materials or facilities are required.6
Vital statistics related to physically challenged children in Jamaica identified thatmore than 37000 Jamaican children live with one or several forms of disabilities including sight, hearing, speech, physical disability, mental retardation and learning disability, (3.86 % of children). Whilethe majority of the children are in the 5 – 14 age group and thus are of school age, only 10 % of children with disabilities are enrolled in formal school based and other programmes receiving funding from the government.
A UNICEF supported study found that some parents viewed the birth of disabled child as having supernatural connections 40% said the child was sent by God while 18% thought the disability was due to an evil spirit, punishment for a sin, or looking at a disabled person during pregnancy.
7.5 percent of 15-17 year children work; 2002 study estimates that 16240 children (2.2%) between 15-17 years were involved in economic activities, mostly between the ages of 15 and 17 (7.5%). The working child is most likely to be a male teenager 15-17 years of age, working a 22 hour average per week. In addition, it is estimated that approximately 2000 children live or work on the streets.
Children (0-19 years) and young people (20-29 years) reported with AIDS account for 9-19% respectively (28%) of total AIDS cases, with AIDS being the second leading cause of death in children aged 1-4 years.7
6.2 Need for the study
The birth of child is time of joy and pleasure. Parents eagerly wait for the new member of their family. A lot of preparation and planning is done for the arrival of the baby. The atmosphere becomes tense if the child is born with a structural defect. The entire planning and preparation is disturbed. Suddenly parents undergo a situational crisis. The unexpected situation disturbs the parents psychologically and causes an emotional crisis. This is increased as surgery to correct the deformity follows.
Burnnard (1988)explained,an infant in a crisis event often evolves feeling of anxiety, fear, anger, guilt, helplessness, shock and disappointment in parents. The nurse should therefore show genuine respect, empathy, understanding and unconditional positive regard because positive attitude helps parents to accept their babies as parents kind to detach emotionally to soften the blow.8
Alan Boylan (1982)explained,nurses recognise that the patient needs information but they feel uncertain as to whether they should give it. Almost any question raised by the patient and relatives is likely to be appropriate to answer in one place and not in another when nurses are uncertain about giving information they resolve their dilemma by delegating the responsibility to the doctor, not creating situation in which to give it, developing blocking technique. Students too never see this aspect of care and grow up professionally without it.9
Selye (1965) in stress of life suggests that the word 'stress' should be used to designate the sum of all the non-specific effects of various factors acting on the body, whereas these agents should be referred to as stressors when we refer to their ability to produce stress1.
In Indian cultures, it is observed that caring responsibility is always undertaken by the mother. The mother who fully devotes herself to the care of the child, may neglect her own needs and may learn to care by trial and error, she is most vulnerable to maladaptation which may impair her own health. Caregivers being dissatisfied due to lack of information are likely to be under stress and may take wrong decisions regarding the treatment of the baby.
Investigator had come across the caregivers who had run from one doctor to another to satisfy their queries about the sickness of the baby and at last took the decision of operation and accepted the child with deformity. They have expressed the feelings that if somebody had explained the facts to them after birth they would have not taken such wrong decision, which made them face economic loss as well as continuous tension and family disturbances.
During her clinical experience the investigator observed that the nurses role is mainly restricted to be an assistant to be an assistant to the doctor. She hardly communicates with caregivers, if it is there it is in relation to transferring messages from the doctor. Nurses too are aware about the condition of the child medical surgical management, but the psychological aspect, is hardly being taken care of.
During the literature review, the investigator came across studies in relation to caregivers stress, which are done in foreign settings. Research on stress among care givers of physically challenged children is still in its infancy in India. Thus there is a need to carry out this study.
6.3 Statement of the problem
“A Study To Assess The Stress Among Care Givers Of Physically Challenged Children In Selected Institutions, Bangalore”.
6.4 Objectives of the study:
- To assess the level of stress among care givers of the physically challenged child.
- To compare the level of stress of care givers with the demographic variables.
6.5 Operational definitions:
- Stress: Stress refers to the physical, socio economic, environmental and illness related factors are considered as stressors causing stress among the caregivers of physically challenged children.
- Care givers: Care givers refers to mother, father or a parent substitute who is taking care of the child at place of stay it may be at institution or at home.
- Physically challenged: It refers to the disabilities such as physical disability, visual impairment, hearing impairment, chronic diseases, spinal cord injury, traumatic brain injury.
- Children: Children who are having physical disabilities from birth to twelve years.
6.6 Inclusion and Exclusion criteria
Inclusion criteria
- Care givers who are willing to participate
- Care givers who are available at the time of data collection.
- Care givers of physically challenged children from birth to 12 years.
Exclusion criteria
- Care givers of physically challenged children are in the terminal stage of illness.
6.7 Assumptions
- Stress is unique and vary from person to person
- Care givers of physically challenged children undergoes various stress.
- Performance of caregivers role will be affected by excessive stress.
6.8 Review of related literature
Review of literature is an important step in the development of a research project. It involves systematic identification, location, scrutiny and summary of written materials that contain information on research problems.10
Review of literature is the systematic and critical review of the most important published scholarly literature on a particular topic. This helps the investigator to find what is already known, and what problems remain to be solved. Since effective research is based upon past knowledge, this exercise provides useful hypothesis and helpful suggestions for significant investigation.
Jung-won Lim and Bard Zebrack (2004) conducted a study on caring for family members with chronic physical illness, included 19 studies on quality of life for family care givers helping those with chronic physical illness. Here they explode the concepts of an instruments used to measure caregivers quality of life. They particularly interested in understanding stress related variables and documenting factors influencing quality of life based on family stress theory. Findings showed that various positive and negative terms equated with quality of life were used to measure them. Results indicated that stress related variables as possible predictors influencing caregivers quality of life include patient and caregiver characteristics, stressors, stress appraisal, stress coping method and social support.11
Cronin, Shapiro Casiro, Cheang (1995) found that parental stress scores were highly associated with low family income and less parental education. They suggested that caregivers need increased awareness of the needs of such families so that their medical and social needs are met effectively. Support services should be targeted toward low income, poorly educated parents whose children have functional handicap.12
Rizzone, Stoddard and Murphy (1994) conducted a study on post traumatic stress disorder in mothers of children and adolescents with burns,study findings indicated that mothers with more than one child with bums' and those mothers who had burnt themselves met diagnostic criteria of post traumatic stress symptoms. They can be disruptive to a mothers feeling capable of caring for her child with burns after the injury. Individual and group therapy during and after hospitalisation may be useful for mothers to reduce stress.13
Aitken and Hathaway(1993) conducted a study on long distance related stressors and coping behaviours in parents of children with cancer. Fifty three parents of children with cancer participated in the study. Theoretical framework used was based on Lazarus theory on stress and coping. The parents completed Hymovich's parent perception inventory. The results showed significant differences in demographic data of parents living 110 miles away from the tertiary treatment centre compared those who live less than 100 miles away from the center. Also there was difference in concerns, beliefs and feelings.14
Whyte(1992) conducted a study on a family nursing to the care of a child with a chronic illness. She found that families caring for a chronically ill child experienced chronic burden related to such stressors as care of the child, unemployment, anxiety about healthy children and finances, and other stresses of ordinary life. As care giving burden increases, stress increases and they find fever coping strategies.15
QuiltnerandDouglas(1990)explored in their studies to assess stressful life events rather than situationally defined stressors and failed to differentiate between acute and chronic stress process.Increased support will be beneficial to those who experience high level of stress. The inclusion of situational factors may improve predications and adoptional outcomes and provide information about how social support may affect current support system.16