A STUDY ON EXPERIENCE OF CAREGIVING, COPING AND EXPRESSED EMOTION AMONG PRIMARY CAREGIVERS OF YOUNG PEOPLE EXPERIENCING
FIRST EPISODE PSYCHOSIS
Dissertation submitted to the
TAMIL NADU DR. M. G. R. MEDICAL UNIVERSITY in partial fulfillment of the rules and regulations
M. D (PSYCHIATRY) BRANCH - XVIII
THE TAMIL NADU DR. MGR MEDICAL UNIVERSITY, CHENNAI, TAMIL NADU
APRIL 2016
CERTIFICATE
This is to certify that the dissertation title, “A STUDY ON EXPERIENCE OF CAREGIVING, COPING AND EXPRESSED EMOTION AMONG PRIMARY CAREGIVERS OF YOUNG PEOPLE EXPERIENCING FIRST EPISODE PSYCHOSIS”
Submitted by Dr. Rasheena Nilofur. S, in partial fulfillment for the award of the MD degree in Psychiatry by The Tamil Nadu Dr. M.G.R.
Medical University, Chennai, is a bonafide record of the work done by her in the Institute of Mental Health, Madras Medical College during the academic years 2013 - 2016.
DIRECTOR DEAN
Institute of Mental Health Madras Medical College
Chennai Chennai
CERTIFICATE OF GUIDE
This is to certify that the dissertation title, “A STUDY ON EXPERIENCE OF CAREGIVING, COPING AND EXPRESSED EMOTION AMONG PRIMARY CAREGIVERS OF YOUNG PEOPLE EXPERIENCING FIRST EPISODE PSYCHOSIS”
Submitted by Dr. Rasheena Nilofur. S, in partial fulfillment for the award of the MD degree in Psychiatry by The Tamil Nadu Dr. M.G.R.
Medical University, Chennai, is a bonafide record of the work done by her in the Institute of Mental Health, Madras Medical College during the academic years 2013 - 2016.
Dr. Poorna Chandrika Associate Professor
Institute of Mental Health Chennai.
DECLARATION
I, Dr. Rasheena Nilofur. S, solemnly declare that the dissertation
titled, “A STUDY ON EXPERIENCE OF CAREGIVING,
COPING AND EXPRESSED EMOTION AMONG PRIMARY CAREGIVERS OF YOUNG PEOPLE EXPERIENCING FIRST EPISODE PSYCHOSIS “has been prepared by me, under the guidance and supervision of Dr. P. POORNA CHANDRIKA, Associate Professor of Psychiatry, Madras Medical College. I also declare that this bonafide work or a part of this work was not submitted by me or any other for any award, degree, diploma to any other University board either in India or abroad.
This is submitted to The Tamilnadu Dr. M. G. R. Medical University, Chennai in partial fulfillment of the rules and regulation for the award of M.D degree Branch – XVIII (Psychiatry) to be held in April 2016.
Place: Chennai Dr. RASHEENA NILOFUR.S Date :
ACKNOWLEDGEMENTS
I thank Professor. Dr.Vimala M.D., Dean, Madras Medical College for permitting me to conduct this study.
I thank Professor Dr. R. Jeyaprakash, M.D., D.P.M., Director, Institute of Mental Health, Chennai for his encouragement, help and guidance.
I thank Professor Dr. Shanthi Nambi M.D. D.P.M, Institute of Child Health for her constant support.
I thank my Guide, Dr. P. Poorna Chandrika M.D, Associate Professor, Institute of Mental Health for her guidance and help.
I thank my Co-Guide to Dr. V. Jaikumar M.D, Assistant Professor, Institute of Mental Health for his guidance and support.
My sincere thanks are due to all the Professors and Assistant Professors of Institute of Mental Health for their encouragement and support.
My sincere thanks to Mrs. Valarmathi, Research officer, Dr.
MGR Medical University for helping me with the statistics.
I sincerely thank my Family members for their help, support and encouragement.
I finally acknowledge and thank all my colleagues and the
CONTENTS
S.NO TOPIC PAGE
NO.
1 INTRODUCTION 1
2 REVIEW OF LITERATURE 4
3 AIM AND OBJECTIVES 29
4 MATERIALS AND METHODS 32
5 DATA ANALYSIS AND RESULTS 37
6 DISCUSSION 70
7 LIMITATIONS 77
8 CONCLUSION 78
9 FUTURE DIRECTIONS 79
10 BIBLIOGRAPHY 80
11 APPENDIX
INTRODUCTION
First episode psychosis is the first time a person experiences psychosis. Onset of psychosis is usually during adolescents and early adulthood. Adolescents who live with their families are emotionally and financially dependent on them. It is a traumatic experience to the person who experiences it and also to the family members. It is the family who usually recognizes the symptoms first and then seek treatment.
Caregivers of young people with First episode psychosis face lot of distress and emotional turmoil as they try to understand what has happened to their loved ones. Families of young people have a lot of expectations from them which a person experiencing psychosis may not be able to fulfill. It becomes the responsibility of family members to take entire care for the person leading to more distress.
Caring for a young person with first episode psychosis is challenging and caregivers face lot of difficulties due to the complexity of the symptoms. First time caregiving is demanding, difficult and they face lot of financial, emotional and physical hardships. Caregivers’
experiences encompass distress, stigma, worry, shame, and guilt, but with positive aspects such as caregiver reward. Caregivers experience a variety of emotions like guilt, self-blame, feeling of hopelessness and
helplessness, or may regret not giving immediate attention to the problem. They may grieve at the loss of their “normal child”.
Caregivers may undertake a wide range of practical tasks including supervising medication regimes, housework, shopping, and maintaining contact with mental health services. These duties place a significant burden on patients’ families, not least because of distress associated with disease symptomatology, but also due to the social stigma associated with mental illness.
Along with emotional hardships, caregivers also face financial problems. They have to tend to the cost of treatment along with the added cost of an adult living at home. As a result they may need to give up paid work or reduce hours worked because of the demands of caring, or even sell assets.
Little is known about the strategies these families use to cope with new caretaking demands. Less adaptive coping skills is also associated with poor outcome in patients. Caregivers also suffer from psychological problems, there is a risk of developing emotional problems, depressive symptoms or even clinical depression.
There is a necessity to focus on caregivers of patients with first episode of psychosis, especially in developing countries where there is a
lack of health systems for managing mental health patients and their caregivers.
Based on this background information provided, the aim of my study is to assess caregivers experience in caring for a relative with First episode psychosis, the ways by which they cope, and also the expressed emotions.
REVIEW OF LITERATURE
Caregiving is thought to be defined as a basic component of human nature and a primary element of close relationships. In India, the family plays a major role in caring for the mentally ill.
An Indian family is seen as a substitute for professional care but not as an essential mental health care. Efforts need to be made to understand the family’s need, provide support and skills training to the family, and help families in networking. (Murthy 2007)
Care givers in India face a much higher burden when they are taking care of the mentally ill people in the community. This is because of inadequate funding for mental health services by the government, lack of adequate number of trained mental health personnel, and the absence of social security services from the state. (Sucharita, 2012)
Caring for a mentally ill relative affects the dynamics of the family.
Family is the main unit which takes care of the patient and the burden has increased with the de institutionalization of psychiatric patients in the past three decade. (Magliano L et al 2007).
Caregiving has consequences on both physical and mental health of the caregiver. Behavior problems in care recipient can be challenging to
manage and it takes the toll on the wellbeing of caregiver and the recipient.
The caregiver appraisal talks about the process where a caregiver estimates the significance of caregiving, and also it considers the nature of the stressor, and the ways he or she cope with these. Caregiving appraisal can be positive, negative, or neutral. In addition, it consist of subjective, cognitive and affective appraisals of the potential stressor and the efficacy of one’s coping efforts (Kinsella G 1998).
Stress- Appraisal- coping model can explain the process of Appraisal of Caregiving. The factors that influence the caregivers experience are the illness factors and also the immediate environment of the caregiver. (Folkman. S 1997). Based on this, the behaviour associated with the patient’s illness, the incapacitating nature of the illness which leads to disability and the perceived disruptions of the caregivers’ life are appraised as stressors by the caregivers. The internal factors are the personality of the caregiver, and the external factors are quality of relationships within families, and the degrees of social support which are the determining factors in caregiver’s stress appraisal (Lazarus1994, Szmukler GI, 1996).
Depending on the interaction between all the factors caregivers experience can be positive, negative or a mixture of both. The appraisal
of caregiving determines the mental and the physical health of the caregiver.
Caregiving consists of all the characteristics of a chronic stress experience: It presents a physical and psychological strain over a long period of time. It is accompanied by a high level of unpredictability and uncontrollability and has the capability to create a second stress factor in multiple life domains: such as job and families. It frequently requires a high level of alertness and patience. Due to how closely caregiving fits into the chronic stress formula, it is used as a model for studying the health effects of chronic stress. (Vitaliano PP, et al. 2003). Caregiver’s stress can be understood through the pearlins stress process model.
In a study conducted by Terrence.V.McCann et al 2009 among 21 primary caregivers of young adults aged 15-24 years with FEP, 6 main themes emerged:
1. Burdensome Responsibility
2. Roller coaster and unpredictable experience 3. Feeling responsible for their illness
4. Coming in terms with the change 5. Becoming closer
6. Maintain Hope -Hope in transition
-Fostering hope in the young person -Developing hope as a caregiver
1. Caregiving can be very difficult, demanding and also unpredictable and it takes the toll on the caregiver. The unpredictable nature of the illness makes it physically, emotionally and economically demanding and the caregivers are in a fix to balance both the caregiving and the family demands. They also struggle to understand what has happened to their affected children (Howard PB 1998). They also experience guilt and blame themselves for the illness.
2. Next the caregivers come to terms with the change and are in a transitional process of acceptance. They go through the process of mourning at the loss of their child. The transition from guilt to hope necessitates a grieving process (Jungbauer J et al 2004), followed by being positive about the reality at least for the foreseeable future. (Pejlert A, 2001)
3. Becoming closer to the care recipient also reflects an unanticipated reward of caregiving. It means strengthening and deepening of the existing relationship. (Howard 1998)
4. Hope gives the caregivers the strength to carry on caring. Hope is very essential in the process of recovery in affected individuals. It helps them to overcome the difficulties and look positively on the future and see light in darkness. (McCann TV, 2002)
Caregiver burden is present in illnesses like dementia, bipolar disorder and psychosis but it is particularly high in FEP (Addington J et al 2000)
How an illness is understood and perceived also plays a role in the experience of burden and coping mechanism used. Health beliefs and illness cognition that is the common sense beliefs about an illness (H.Leventhal et al 1995) will also have an influence on this.
Caregivers experience a lot of emotions like Guilt as they may consider it as their fault, loss, helplessness as they cannot do much about it, fear, vulnerability, anxiety, resentment, and anger. (Lefly H. P1997)
Addington J et al 2000 conducted a study among 238 family caregivers of first episode psychosis diagnosed as schizophrenia spectrum disorder. To the caregivers their appraisal of the impact of caring for their family member is assessed by the Experience of caregiving Inventory and the level of distress is measured by the psychological wellbeing Scale.
Higher score on positive and negative symptoms and also younger age of the patient is associated with poor score on ECI. Mothers showed more concern over difficult behaviours, loss and negative symptoms.
On average the families were moderately distressed. 26% had severe distress and 21% had moderate distress. Poor psychological wellbeing is associated with younger age of onset of illness and younger age of the patient.
Lakshik A Tennakoon et al, 2000, in a study among 50 relatives of people experiencing first episode of psychosis found out that women had higher scores for Effects of family on illness and parental caregivers had higher scores on stigma than the siblings on Experience of caregiving inventory. Significant correlation was found between dependency, effect
of illness and emotional coping. They also used practical coping for negative behavior.
Amanda Mc Cleery in 2006, used 3 scales to determine the caregiver experience and distress among family members of Individuals with FEP. The scales were ECI (Experience of caregiving), Caregiver burden inventory (CGI) and Psychological general wellbeing scale.
Significant association was seen between ECI and CBI, and Psychological distress.
People with psychosis who have caregivers have more favorable outcomes compared with those who don’t in terms of treatment compliance, fewer inpatient admission and increased quality of life.
(Norman et al 2005).
Studies have demonstrated that family caregivers of persons with severe mental illness suffer from significant stress, experience moderately high levels of burden and often receive inadequate assistance from mental health professionals (Saunders, 2003).
In a study done by Ruth Gerson et al 2009 experience of families in seeking treatment of relatives with first episode psychosis was addressed and the participants’ response varied from anger, frustration, stigma due to the illness, trauma due to involuntary hospitalization, difficulties in a
At the same time a few relatives who expressed gratitude was for the information provided to them by the doctors and staff.
A study was conducted by Terrence V Mc cann to explore the stigma and the way by which they respond in caregiver’s of young people with first episode psychosis. Two main themes emerged, being open to relatives or friends, being secretive and not revealing it to anyone, the caregivers were worried about not rejection by the community, loss of status and isolation. Each coping has its own benefits and drawbacks. It was concluded that for younger persons being open and in contact with others enable them to obtain greater support.
Negative effects of caregiving:
The strongest predictor of the caregiver distress has been the behavioural disturbance, how often it occurs and how disruptive it is determines the decision of the caregiver to institutionalize the patient.
(Cohen D 1990)
Patient factors that have an association with the psychological distress include behavioural disturbance, Impairments in functional and occupational areas, Physical impairment, cognitive impairment and the fear of losing the person or the possibility of suicide.
Factors that are associated with negative experience of caregiving include the relationship of the caregiver to the care recipient (Goncalves-
Pereira M, 2013 the age of the caregiver(Hadryś T,2011) and the social support received by the (Kuipers E 2005) the gender of the caregiver also is an important factor as women perceive more distress. (Weimand BM2010, Rudnick A 2004)
Risks for caregiver psychological distress or depression are related to gender, age, health status, ethnic and cultural affiliation, lack of social support, as well as certain other characteristics related to the caregiver (Grutzner H.M, 2001)
In a report of the Princess Royal trust of caregivers, about 9 out of 10 caregivers are in some way affected either physically or mentally, directly or indirectly
Physical and Mental Health Consequences Associated with Caregiving Research suggests that caregivers, or a subgroup of caregivers, are at risk for negative physical health effects, which may emerge over time as care demands increase (Schulz and Beach 1999;
Schulz et al. 1997).
Caring for a mentally ill includes assistance with activities of daily living (ADLs) such as bathing, dressing, eating, and transferring which in turn can put a great deal of strain on a caregiver’s physical health.
Research suggests that caregivers may experience direct and indirect
vaccination (Glaser et al. 2000), higher levels of stress hormones (GallagherThompson et al. 2006; Vitaliano et al. 2003), and poorer sleep quality (Brummet et al. 2006).
Additional research indicates that caregiving also can have significant consequences on the mental health of caregivers. Studies report higher levels of distress, depression, memory problems and emotional instability compared to the noncaregivers. (Brehaut et al. 2004;
Douglas and Daly 2003).
Additional research indicates that caregivers may also experience lower levels of subjective well-being and self-efficacy (Pinquart and Sorensen 2003), 18 D. L. Elmore higher negative affect, and poorer levels of social support (Brummet et al. 2006). As explained above, evidence suggests that the physical and mental health consequences of caregiving are intimately linked (Cannuscio et al. 2002).
The Role of Chronic Stress in Caregiver Health According to Ray (2004), stress occurs when there is an imbalance in the environmental demands placed on an individual and the individual’s ability (or perceived ability) to cope with these demands. It is easy to see how this imbalance can result in caregiver stress. Stress can play a significant role in the physical and mental health of caregivers. Vitaliano et al. (2003) identifies two pathways by which chronic stress can impact caregiver
health. One pathway suggests that chronic stress leads to psychosocial distress and increases in stress hormones. The other pathway links chronic stress to risky health behaviors (e.g., substance abuse, poor nutrition, sedentary lifestyle) that are often associated with physical and mental health problems (Vitaliano et al. 2003).
A great deal of evidence suggests that chronic stress can result in a variety of physical and mental health challenges, including increased risk of metabolic syndrome (Chandola et al. 2006), immune dysregulation, increased risk for disease, delayed wound healing, and premature aging (Robles et al. 2005).
Caregivers who undergo a lot of stress and strain to fulfill their caregiving demands affects the physical and psychological health of all caregivers. These include symptoms of depression, anxiety; sleep disturbance, self-care, and other health related activities (Schulz et al.
1997; Schulz and Beach 1999); and an increased risk of infection (Kiecolt-Glaser et al. 2003).
Further evidence has identified caregiving as an independent risk factor for mortality among strained caregivers, had a 63 % more possibility of death within four years when compared to noncaregivers (Schulz and Beach 1999). These mortality rates were highest among
those who already had disease and next highest in those caregivers with subclinical disease (Schulz and Beach 1999).
One of the first studies on caregivers of first episode psychosis was by the Scottish Schizophrenia Research Group in 1987.Among the 31 caregivers of relative with first episode psychosis about 77% of them had high scores on GHQ which indicated psychiatric morbidity.
Tennakoon et al reported that 12% of caregivers of 36 first episode subjects presented with psychiatric morbidity on the GHQ. The caregivers who are professionals had higher mean scores on GHQ than the skilled labourers similarly divorced caregivers had higher score on GHQ than the married caregivers. The caregivers also had to cope with the difficult behaviours and negative symptoms which are the most challenging. Disorganized symptoms in recent onset psychosis is associated with more distress and burden than the negative symptoms in them.
The emotional impact of any psychiatric disorder on family or primary caregivers can vary from frustration, anxiety, fear, depression and guilt to grief. Because care giving is such an emotionally draining experience, caregivers have high rates of depression when compared to the general population. (Shabana Basheer 2005)
In a study form India on caregiving appraisal in schizophrenia, Subjective experience of burden was influenced by the severity of symptoms in the patients and, time spent with them in their care and also the coping strategies which were used. All this contributed significantly to the caregiver psychological morbidity. It was concluded in the study that better control of symptoms in first episode will decrease the burden in the caregivers. (Natasha Kate 2013).
The strain of caregiving demands has been linked to poor health outcomes including depression, physical illness, anxiety, and poor sleep habits (Schulz et al. 1997).
Caregiving can be a rewarding opportunity for many family caregivers, this labor of love can put individuals at risk for substantial stressors, including financial, physical, and psychological hardship.
Research indicates that caregivers may put their own health and well- being at risk while assisting loved ones (Burton et al. 1997; Tang and Chen 2)
A study done by Lena Flick ET al. of caregivers spend about one half of the work hours with the care related activities. In addition to the time spent the caregivers also face difficulties at work due to reduced productivity.
In a literature review on Quality of life in caregivers of Schizophrenia by (Alejandra Caqueo-Urizar et al Feb 2009) 37 articles were reviewed. It showed similar outcomes from different part of the world. Caregivers health highly deteriorated. Working life was significantly affected. Damage in social life and lack of social support lead to complaints towards treatment delivery. Caregivers with more traditional families use religion as a way of coping. Mother is the main caregiver as shown in many studies and also has worst QOL.
Distress in caregivers is not just caused by the illness related stress but also by the coping strategies used by the caregivers (Kuipers et al 2010). Caregiver distress is high in early psychosis and they report only few positive experiences (Mc Cann and Lubman, 2009; Onwumere et al., 2008)
In a study among caregivers of schizophrenia significant proportion had sleep difficulties, pain, headaches, heart burn, anxiety and depression.
(Shaloo Gupta 2001)
Positive Effects of caregiving:
Positive caregiving is a subjective event and there is no definition as such. Positive caregiving is usually defined in terms of gains, satisfaction and caregiving experience.(Szmukler GI 1996, nolan M 1996, Lawton MP 1991).
Caregiver satisfaction is most the common term in terms of positive experience.( Oberst MT 1989)It is the benefits of occurring to the caregiver through his or her own efforts.( Kramer BJ 1997)
There are 4 domains of positive caregiving personal gains, motivation for caregiving role, caregiver satisfaction and self-esteem and social aspects of caring.
Caregivers who maintain positive feelings towards their relative have a greater level of commitment to caring and a lower level of perceived strain. (Horowitz, 1983)
Some studies on caregivers have shown that in the initial period of caregiving the caregivers may not experience any negative effects, they cite some positive aspects of caregiving. (Hirst M 2005)
Kramer, Beach et al 2000 suggest benefit of caregiving like increased closeness to loved one, a sense of satisfaction. Research also
suggest that psychosocial factor like social support and positive emotional states like optimism can be a protective factor against illness.
According to Chesney et al. (2005), positive emotions can have a beneficial impact on health and well-being. For example, higher levels of optimism are suggested to be associated with lower levels of stress and depression (Brissette et al. 2002), reduced risk of illness, more rapid recovery from illness, and utilization of fewer sick days following a significant life event (Kivimaki et al. 2005).
Wight et al. (1998), caregiving can be an enriching and life enhancing experience, thereby creating a positive impact on caregiver health. Evidence suggests that some individuals derive benefits from their role as caregiver, including improved mental health, increased closeness to their loved one, and a sense of satisfaction related to fulfilling this important duty The Impact of Caregiving on Physical and Mental Health (Beach et al. 2000; Kramer 1997).
In addition, research indicates that caregivers who continue to fulfill social roles outside their duty as caregivers often report better health (Wight et al. 1998). A growing area of investigation, sometimes referred to as “positive psychology,” has a great deal of relevance to understanding and promoting the physical and mental health of caregivers. This area of research suggests that psychosocial factors (e.g.,
social support) and positive emotional states (e.g., optimism) can act as protective factors against illness (Hooker et al. 1992; Kivimaki et al.
2005). Billings et al. (2000), identify mood as “an important psychophysiological pathway between coping and health.”
Addington J et al in a follow up study of 185 caregivers of FEP found that the caregivers reported more of positive personal experience than Good aspect of relationship.
Taaricone et al reported that caregivers of patients with psychosis valued good aspect of relationship more than the positive personal experience
Positive appraisal of relationship with young adult with psychosis is related to lower levels of caregiver distress.(Pick et al ).There are also studies which show that caregivers with more negative scoring also have a high positive scoring.(Addington 2003, Harvey k 2001).
The relationship between sociodemographic profile and positive experience of caregiving has been explored in few studies and it has shown higher positive experience in females and in older men. While it was significantly lower in unemployed and young caregivers. Similarly negative symptoms in caregivers is associated with low positive appraisal. (Parmanand, 2012)
COPING
The coping strategies are conventionally defined as “adaptive” vs
“maladaptive” or as “problem-focused” vs “emotion-oriented”. Problem- focused coping strategies, such as: problem-solving, planning, and taking action, have been commonly described as adaptive; whereas emotion- oriented strategies, such as venting and denial, are commonly described as maladaptive. Problem focused coping involves dealing with the problem. Emotion focused coping is used to manage the emotions that is associated with stress, so that it can help in minimizing the distress.
Positive emotion focused coping like seeking social support and positive reappraisal can has better outcome in the long run than negative coping like distancing and escape avoidance which can be helpful in the short run but has detrimental effect in the long run. (Ben- Zur 2009) .Every individual uses a mix of coping but in general it is said that problem focused coping is better as it deals with the problem directly.
Coping measures which are used is determined by the psychological factors like cognitive appraisal, self-esteem. Environmental factors include social support, education and economic status. (Eckenrode J 1991, Kessler RC 1991).
In a study, Stanton and colleagues suggested an alternate scale for understanding coping, categorizing “approach” strategies (e.g. problem- focused and emotion-oriented coping strategies) vs. “avoidant”
strategies(e.g. denial, disengagement). Based on their conceptualization, approach strategies can predict a better adjustment over time, though other sources argued that denial and avoidance may also be adaptive after an acute stressor is introduced. Nonetheless, approach vs. avoidance is a useful and non-judgmental way for understanding coping.
Hope parallels the Huang et al cognitive coping strategy, positive thinking, affective and spiritual elements which is the key coping strategy to help reduce caregiver burden.
A study has described caregivers experiencing positive personal caregiving experience used more of problem-focused coping strategies like planful problem solving and seeking social support. (Lau DYK 2007) In a study that was done in India, it was discovered that minimal use of denial along with a higher use of problem-solving coping is connected to a greater caregiver wellbeing [Rammohan A 2002)
Tennakoon et al 2000 assessed the coping in caregivers patients with FEP The used the Ways of coping questionnaire which assessed 4 coping styles Emotional, practical, spiritual and detachment. Negative
symptoms and difficult behavior in participant were interrelated with emotional and practical coping skills.
Studies from India suggest that caregiver’s gender has a significant influence on coping patterns. Female caregivers were found to be using problemfocused and seekingsupport strategies more often, and avoidance less often. Married caregivers more often seek spiritual help.
Other studies have reported no association between sociodemographic profile and coping strategies used.
In a study from Europe reported that problemfocused coping strategies were more frequently used by young relatives of schizophrenia and were more frequently used by relatives of patients of younger age.
In a study by Juliana Onwumere 2011 coping styles of caregivers with recent and long term psychosis was compared. Distress was positively linked to Avoidant coping. It was not affected by the illness length. There was no association between caregiver demographic profile and coping strategies.
Coping through avoidance has been connected to a weaker functioning in caregivers and to strained relationships within families (Raune et al., 2004). Caregivers feel overwhelmed and are not sure how to react when facing the confused and distressing behavior of a patient. In addition, strategies (i.e., behavioral disengagement, mental
disengagement, alcohol/drug use, and denial) may be adopted by the caregivers in order to protect themselves (Rose et al., 2002).
Caregivers have been reported to experience less number of symptoms for depression when using active coping strategies, like problem-solving. This is in contrast to those who prefer more passive methods. Common trends have been discovered between positive strategies for managing disturbed behavior, active strategies for managing the illness, and condensed levels of caregiver depression (Haley W.E, 1987).
Roy Chaudhri et al reported that in spite of high levels of distress caregiver reported subjective wellbeing in the normal range which showed good coping skills in the caregivers.
Caregivers should learn how to find better ways of dealing with stress. Doing this will allow caregivers to reduce the amount of stress significantly.
Bourgeois et al (1997) reported that a caregiver’s mood will improve when they have behavioural skills and effective self- management programs. In addition, this also leads to a reduced number patient behavioural problems. Stevens and Burgio (2000) developed a caregiver intervention method that taught behavioural management skills
to address problems shown by people, as well as problem-solving strategies to increase good activities for the caregiver.
A passive coping styles is said to be linked to a larger degree of burden. People using escape-avoidance coping style have more depression and interpersonal conflicts.
EXPRESSED EMOTION
Caregiver burden is particularly large during first episode psychosis (Addington J 2003) and there is evidence to suggest that this is a predictor of poor long-term outcome for the patient (Alwarez Jimenez 2012). Through the influence of ‘expressed emotion’ (EE), a mediation of high caregiver burden may exist. EE is emotion displayed by close relatives towards family members, ( Cheng At 2002) and higher levels of caregiver burden has a connection with large levels of EE in patients experiencing first episode psychosis. (Raune et al 2004). High EE is present in over half of patient-caregiver relationships in first episode psychosis. (Bachman 2002) High EE indicated an increase of relapse rate in patients experiencing psychosis or schizophrenia. There is also a relationship to an increase in levels of anxiety and depression in both patients and caregivers. (Butzallaf RL 1998).
Schizophrenic people exposed to low levels of criticism, emotional over involvement (EOI), and/or hostility, are less likely to experience a symptomatic relapse than those who are exposed to the same environment in which presence of these factors is high. (Butzlaff and Hooley, 1998).
The attribution model of Weiner 1995 for Expressed emotion says that those relatives who perceive the past behaviours of the patient to be
reactions to ill relative. As a result, exposure to these negative reactions is believed to create a psychosocial stressor for the individual with schizophrenia, resulting in biological mechanisms that trigger the psychotic symptoms (Hooley and Gotlib, 2000).
Relatives who identified the cause of patients’ behaviors and symptoms as more personal to the patient and controllable by the patient led to higher levels of criticism. (Brewin et al et al, 1991; Weisman et al et al, 1998) Higher criticism levels are also linked to more troublesome behaviors in patients (Boye et al et al, 1999) and a failure to engage in productive activity (King et al et al, 2003). Emotional over involvement (EOI) is connected to a great amount of anxiety and depression and less aggressive and uncritical behaviour detected by family members (Bentsen et al et al, 1996, 1998).
In a study by Katerina Koutra Et Al, relationship between patient illness characteristics such as symptom severity and specific aspects of family functioning such as Expressed emotion and psychological distress was assessed in both in 50 patients with first episode psychosis and 50 chronic patients. Greater symptom severity was associated with increased EOI (β coefficient 1.03; 95 % CI 0.02, 2.03), and psychological distress (β coefficient 3.37; 95 % CI 1.29, 5.45). Family burden was found to be significantly related to both symptom severity (β coefficient 3.01; 95 %
CI 1.50, 4.51) and patient's functioning (β coefficient -2.04; 95 % CI - 3.55, -0.53). It was concluded that severe psychopathology was associated with low family functioning.
In a study done by D.Raune et al in 2004 caregiver’s appraisal model was assessed on 46 caregivers of patients with FEP. Nearly half (44%) had high expressed emotion. It was found that there is no association of high EE with diagnosis, illness length, age of onset, total severity of symptoms. High EE was also associated with avoidant coping and higher burden. Caregiver’s appraisal of the situation played a major role to determine high EE than patient illness characteristics.
Kuipers & Raune, during their study, documented proof of high levels of EE that was associated with an increase in impact of care (burden) and coping style. Discovery of EE in family members of first episode patients saw that EE was not a stable index during the early periods of the illness.
AIM OF THE STUDY
PRIMARY OBJECTIVE:
• To assess the caregiver experience of primary caregivers of young person with First episode psychosis.
• To assess the strategies of coping in primary caregivers of young person with first episode psychosis.
• To assess the expressed emotions of primary caregivers.
SECONDARY OBJECTIVE:
• To correlate socio demographic profile of caregivers with experience of caregiving inventory and ways of coping.
• Correlation between patients symptomatology and caregiving experience.
• Correlation between patient symptomatology and coping strategies.
• To find out the association between caregiving experience and coping.
• To assess the effect of gender of the patient on caregiver distress.
• To assess the difference in caregiver experience and coping between male and female caregivers.
• To correlate Expressed emotion with Psychological distress and coping.
• To correlate between Sociodemographic profile of caregivers and expressed emotion and GHQ.
NULL HYPOTHESIS
1. There is no relationship between the demographic profile of the caregivers and the Experience of caregiving, ways of coping and Expressed Emotion.
2. There is no relationship between patient’s symptomatology and Experience of the caregivers.
3. There is no difference in coping between male and female caregivers.
4. There is a difference in caregiver appraisal between male and female patients.
5. There is no significant correlation between Coping strategies used and the experience of caregiving.
MATERIALS AND METHODS
This is a cross sectional study conducted in Institute of Mental Health, Kilpauk Chennai. Young persons diagnosed as schizophrenia spectrum disorders according to ICD-10 were chosen from both outpatient and inpatient department. Primary caregivers of these patients were included in the study.
INCLUSION CRITERIA
• Patients aged 15- 35 years (young as defined in southeast Asian countries) diagnosed as schizophrenia spectrum and other psychotic disorders as per ICD 10 criteria using SCAN Questionnaire who are willing to participate.
Caregivers-
• Family members who live with the patient and provide emotional and financial support.
• more than 18 years of age
• First time caregiver experience EXCLUSION CRITERIA
• organic conditions
• Mood disorders
• Substance Use except Nicotine
• No psychiatric illness in caregiver Sampling – Consecutive sampling Sample size- 60
DATA COLLECTION
• Informed consent from the participants
• Socio demographic profile of the patient and the caregiver.
• Name, age, sex, education, occupation, socioeconomic status, religion, duration of illness, duration of untreated psychosis in case of patients.
• PANSS scale will be given to the patient which measures the symptom severity. It is a 30 item scale. 7 constitute a Positive Scale, 7 constitute Negative Scale, and the remaining 16 constitute a General Psychopathology Scale. The potential ranges are 7 to 49 for the Positive and Negative Scales, and 16 to 112 for the General Psychopathology Scale.
For caregivers
Experience of caregiving Inventory
This is a 66 item questionnaire. Items are scored on a 5 point Likert scale. It measures the positive and negative aspects of caregiving. It has 8 subscales for negative experience and 2 subscales for positive experience.
This scale is based on the caregiver appraisal.
Negative aspects- 1. Stigma
2. Difficult behavior 3. Negative symptoms 4. Problems with services 5. Effect on family
6. Need to back up 7. Dependency 8. Loss
Positive aspects
9. Positive personal experience 10. Good aspects of relationship Ways of coping – Folkman and Lazarus
This is a 66 item self-reported questionnaire scored on a Likert scale of 0-3. This scale measures the coping processes, it identifies the
situations. It is a measure of intra individual coping styles that is the basic coping behaviours which influences the health of the caregiver in an indirect way.
Measures 7 coping styles 1. Distancing,
2. Self-controlling,
3. Seeking social support, 4. Accepting responsibility, 5. Escape avoidance,
6. planful problem solving, 7. Positive reappraisal.
Negative Emotion Focused coping – Escape avoidance, Accepting responsibility, Distancing
Positive Emotion focused Coping-Self controlling and positive reappraisal.
Problem Focused coping- Seeking social support, Planful problem solving
Family Questionnaire – For expressed emotion.
20 items- measures Criticism (CC) and emotional over involvement. (EOI). The items are scored from 1 to 4 yielding a
maximum score of 40 in each subgroup. Caregivers are classified as high EE if they score 23 or greater on the CC subscale or 27 or greater on the EOI subscale.
EOI includes over-intrusive, self-sacrificing, overprotective behaviour, or exaggerated emotional response, and over-identification with the patient.
CC is defined as unfavorable comments on the behaviour or the personality of the patient (Vaughn & Leff, 1976b).
The FQ has good psychometric properties including a clear factor structure, good internal consistency of subscales and good concurrent validity in relation to the widely used Camberwell Family Interview (Vaughn & Leff, 1976a) for Expressed emotion.
GHQ- 12 items self-report scale- Screening instrument for psychological morbidity. 4 possible responses scored from 0-3. Score ranges from 0-36. Scores vary by study population.
Scores about 11-12 are typical.
Score > 15 - evidence of distress.
Score > 20 - suggests severe problems and psychological distress Data will be collected by the principal investigator
Statistical analysis will be done using SPSS version 20.
RESULTS
Table 1: Socio-demographic data of Caregivers Sociodemographic data Cases(n=60)
Number Percent
Sex : male
Female
22 38
36.7 63.7 Education :uneducated
Primary Secondary
Degree
8 28 19 5
13.3 46.3 31.7 8.3 Occupation : unemployed
Unskilled Semiskilled
Skilled Professional
14 18 19 14 5
23.3 30 15 23.3
8.3 Marital status : married
Unmarried Divorced
56 3 1
93.3 5 1.7 Domicile : rural
Urban
33 27
55 45 SES :low
Middle 37
23 61.7
38.3 Religion : Hinduism
Christianity Islam
41 12
7
68.3 20 11.7 Relationship to patient:
Mother Father spouse Sibling
34 11 12 3
56.7 18.3 20.0 5.0
Table 2: socio-demographic data of Patients
Sociodemographic data (n=60)
Number Percent
Age :
15-35 60
100
Sex : male
Female
36 24
60 40 Education :
Primary secondary
Degree
11 34 15
18.3 56.7 25 Occupation : unemployed
Unskilled Semiskilled
Skilled
29 8 19
4
48.3 13.3 31.6 6.7 Marital status : married
Unmarried Divorced
24 34 2
40 56.7
3.3 Diagnosis: Schizophrenia
Acute and transient psychosis
Delusion disorder Schizoaffective
disorder
41 11 5 3
68.3 18.3 8.3 5.1
Table 3: Illness Characteristics
Mean SD
Age of onset of illness 23.68 5.574
Duration of untreated psychosis (weeks)
28.53 21.159 Duration of illness(weeks) 35.28 22.79
Duration of treatment(weeks)
6.87 2.96
Positive symptoms 20.73 6.35
Negative symptoms 16.15 5.97
Global psychopathology 17 8.32
Age of onset of illness ranges from 16-34 and duration of treatment is from 1-11 Weeks.
Table 4: Mean Scores of Experience of caregiving Inventory
Mean SD
Stigma 9.52 3.39
Difficult Behaviour 17.15 4.02 Negative symptoms 9.10 2.95 Problems with Services 14.97 5.02 Effect on family 11.93 3.28
Need to backup 12.40 3.81
Dependency 10.25 2.45
Loss 9.13 2.31
Positive Personal Experience 11.58 5.19 Good aspects of relationship 10.00 4.32
DATA ANALYSIS
Statistical Analysis is done using SPSS version 20.
Independent t- test is used to compare dependent variables Experience of caregiving Inventory (ECI), Ways of coping (WOC), Expressed Emotion EOI and CC with the means of two groups.
ANOVA is used to compare dependent variable and continuous variables with more than two groups.
Karl Pearsons Correlation is used to correlate between two variables.
P value is significant at the level of 0.05
Table: 5 Comparison OF Mean ECI between Male and Female Caregivers
SEX
Male Female p-value Mean SD Mean SD
DB 16.82 3.9 17.3 4.15 0.631
S 10.32 2.75 9.05 3.66 0.166
NS 9.68 2.62 8.66 3.06 0.114 PWS 14.5 5.36 15.21 4.87 0.625 EOF 12.68 3.42 11.50 3.16 0.181 NB 12.64 3.73 12.26 3.89 0.718 D 10.41 2.53 10.16 2.42 0.705 L 9.00 2.30 9.21 2.33 0.737 PPF 10.64 4.31 12.13 5.62 0.287 GAR 9.09 4.08 10.53 4.43 0.218
S- Stigma, DB- Difficult Behaviour, NS – Negative Symptoms, PWS- Problem with services, EOF- Effect on family, NB- Need to backup, D- Dependency, L- loss, PPE- Positive personal Experience, GAR- Good Aspects of Relationship.
No significant difference is seen the experience of caregiving between male and female caregivers
Table 6: Comparison of Mean ECI between Urban and Rural caregivers
Domicile Rural Urban p-value Mean SD Mean SD
DB 16.97 3.869 17.37 4.271 .705 S 8.36 3.287 10.93 3.012 .003 NS 9.27 2.742 8.89 3.226 .620 PWS 16.42 4.776 13.19 4.812 .012 EOF 11.48 2.980 12.48 3.599 .245 NB 12.70 3.636 12.04 4.043 .509
D 10.76 2.208 9.63 2.619 .075 L 8.67 2.217 9.70 2.334 .084 PPF 11.00 5.130 12.30 5.283 .341 GAR 9.55 4.265 10.56 4.414 .373
Significant P < 0.05
S- Stigma, DB- Difficult Behaviour, NS – Negative Symptoms, PWS- Problem with services, EOF- Effect on family, NB- Need to backup, D- Dependency, L- loss, PPE- Positive personal Experience, GAR- Good Aspects of Relationship
The above table shows there is significant difference in Stigma and problems with services between urban and rural population with higher mean scores in caregivers living in urban areas.
Table 7: Comparison of Mean ECI with the education of the caregiver
Education ILLITERATE PRIMARY SECONDARY GRADUATE P - VALUE MEAN SD MEAN SD MEAN SD MEAN SD
S 8.88 4.22 9.05 3.20 9.64 3.49 11.60 1.52 .473 DB 11.09 5.12 18.53 4.128 16.61 3.65 17.80 2.86 .222 NS 9.50 1.85 8.79 3.34 7.98 3.08 9.20 2.68 .947 PWS 12.88 2.41 16.37 5.23 14.46 5.22 15.80 5.80 .356 EOF 14.00 3.20 9.61 2.78 11.86 3.45 12.80 3.42 .153 NB 12.25 3.99 13.16 3.38 11.75 3.85 13.40 5.17 .598 D 10.00 2.00 10.05 2.19 10.25 2.75 11.40 2.51 .736 L 8.75 1.75 8.84 2.26 9.68 2.46 7.80 2.04 .295 PPE 8.25 4.20 10.16 4.11 12.61 4.10 7.49 7.33 .012 GAR 7.38 2.82 8.47 2.89 111.11 4.66 13.80 5.12 .009
There is significant difference between positive experience and education status of the caregiver. It is depicted in the box plots below.
Table 8: Comparison of Mean ECI with the Occupation of caregivers
Significant difference is seen between Positive experience and Occupation of the caregiver.
Occu patio n
Un employed Un skilled Worker
Skilled Worker
Clerical / Farmer
Professional P- VAL
UE
MEAN SD MEAN SD MEAN SD MEAN SD MEAN SD
S 36.57 24.3 35.94 24.15 44.22 22.0 30.43 21.8 26.80 19.5 .129 DB 17.93 4.12 17.17 4.57 17.00 4.71 16.36 3.02 17.40 3.97 .902 NS 9.29 2.58 9.28 2.82 9.67 3.93 8.64 3.22 8.20 2.28 .878 PWS 15.50 4.18 15.61 4.97 12.67 5.36 13.79 5.67 18.60 3.43 .221 EOF 12.29 2.92 10.72 3.023 12.11 10.3 13.00 3.94 12.00 3.16 .399 NB 14.00 3.61 11.89 3.067 11.00 4.18 12.29 4.25 12.60 4.77 .407 D 10.21 1.88 10.56 2.79 8.67 2.34 11.07 1.81 9.80 3.63 .215 L 8.36 1.91 9.33 2.19 8.22 1.56 9,57 2.62 11.00 3.16 .139 PPE 9.93 5.09 10.56 4.57 9.78 4.96 13.29 4.03 18.40 5.72 .006 GAR 8.29 3.70 9.17 3.79 9.00 3.81 11.29 4.66 16.00 2.00 .004
Table 9: Comparison of Mean ECI with Relationship to patient
No significant difference is seen between Parents, siblings and spouses in relation to Experience of caregiving inventory.
Relatio nship to Patient
Mother Father Sibling Spouse P – VALUE MEA
N
SD MEA N
SD MEAN SD MEAN SD
S 9.00 3.44 10.55 2.69 9.00 4.35 7.82 3.68 .521 DB 17.50 4.34 16.55 3.44 19,67 2.08 16.08 3.89 .481 NS 8.71 3.040 10.82 2.67 7.33 2.88 9.08 2.57 .142 PWS 14.97 4.87 15.82 5.25 14.33 6.65 14.33 5.44 .911 EOF 11.59 3.43 11.91 3.11 15 1.00 12.17 3.24 .391 NB 12.18 3.77 13.18 3.60 11.00 6.56 112.67 3.75 .799 D 9.51 2.33 10.27 2.79 8.67 2.08 10.42 2.68 .829 L 9.41 2.27 9.36 2.29 8.67 4.61 8.25 1.81 .489 PPE 10.09 5.88 9.45 4.52 10.33 6.08 12.25 2.70 .464 GAR 10.41 4.37 8.73 4.26 8..00 5.29 10.50 4.21 .570
Table 10: Correlation between positive symptoms of patients with ECI
Variable
Correlation value p value
Positive symptoms P vs
DB .755 .000
S .20 .878 Ns -.444 .000
PWS .034 .796
NB -.084 .525
EOF -.084 .525
D -.032 .811 L -.138 .292 PPF .188 .150
GAR .083 .531
Significant P < 0.05
S- Stigma, DB- Difficult Behaviour, NS – Negative Symptoms, PWS- Problem with services, EOF- Effect on family, NB- Need to
backup, D- Dependency, L- loss, PPE- Positive personal Experience, GAR- Good Aspects of Relationship.
There is positive correlation between Positive symptoms and difficult behavior (P .000).No significant correlation between other domains of ECI. Below is the scatter plot
TABLE 11: Correlation between Negative symptoms with ECI
Variable Correlation value p value Negative symptoms
N vs DB -.394 .002
S -.006 .961 Ns .687 .000
PWS .336 .009
NB .237 .069
EOF .124 .345
D -.033 .804 L -.110 .405 PPF .193 .139
GAR .102 .440
Significant correlation is seen between Negative symptoms of patient and appraisal of negative symptoms by the caregiver. Below is the scatter plot.
Table 12: Correlation between gender of the patient and ECI
SEX Male Female p-value
Mean SD Mean SD
S 9.69 3.060 9.25 3.893 .112
DB 17.03 3.707 17.33 4.536 .128 NS 9.67 2.976 8.25 2.754 .715 PWS 15.03 5.180 13.33 4.462 .293
EOF 11.86 3.296 12.04 2.329 .942 NB 13.86 2.265 10.21 3.401 .152
D 10.28 2.433 10.21 2.519 .722
L 9.42 2.062 8.71 2.629 .397
PPF 10.86 4.441 12.67 6.098 .116 GAR 9.78 4.356 10.33 4.351 .911
Table 13: Comparison of Mean ways of coping with male and female Caregiver
SEX Male Female p-value
Mean SD Mean SD C 9.090 3.308 8.815 3.169 .318 D 9.000 2.760 7.157 2.444 .028
SC 9.818 2.593 8.973 2.604 .132 SS 8.954 2.951 8.263 2.101 .437 AR 4.136 1.807 3.605 1.619 .521
EA 10.86 3.845 10.68 3.735 .692 PPS 7.318 2.784 7.789 2.632 .357
PR 7.409 3.275 8.026 2.552 .472
C- Confrontive coping, D- Distancing, SC- self controlling, SS- Seeking social support AR- Accepting responsibility, EA-Escape Avoidance, PPS- Planful problem solving, PR-positive reappraisal.
There is significant difference between Distancing and gender.
Table 14: Comparison of mean ways of coping with education of caregivers
Education
ILLITERATE PRIMARY SECONDARY GRADUATE P - VALUE MEAN SD MEAN SD MEAN SD MEAN SD
C 10.25 4.026 9.947 2.914 8.107 3.022 7.4 2.509 .095 D 8.625 2.263 7.631 3.076 7.75 2.562 7.8 3.114 .851 SC 10.25 2.434 8.263 2.423 9.571 2.348 10 4.301 .195 SS 8.125 1.642 7.894 2.306 8.607 2.346 11 3.535 .081 AR 3.375 2.445 4.421 1.464 3.607 1.571 3.2 1.643 .261 EA 9.875 2.531 12.10 4.470 10.25 3.606 9.8 2.167 .295 PPS 6.875 2.997 6.421 1.304 8.571 2.872 8 3.464 .040
PR 7.5 3.070 6.315 2.001 8.714 2.786 8.8 3.618 .027
C- Confrontive coping, D- Distancing, SC- self controlling, SS- Seeking social support AR- Accepting responsibility, EA-Escape Avoidance, PPS- Planful problem solving, PR-positive reappraisal
Significant P < 0.05
The above table shows significant difference between Education and planful problem solving and Positive reappraisal. Below is the box plot depicting the same.
Table 15: Comparison of Mean Ways of coping with Occupation of the caregiver
Significant p < 0.05
C- Confrontive coping, D- Distancing, SC- self controlling, SS- Seeking social support AR- Accepting responsibility, EA-Escape Avoidance, PPS- Planful problem solving, PR-positive reappraisal
Significant difference is seen in Positive reappraisal as a coping strategy and occupation
Occup ation
Un employed Unskilled Worker Skilled Worker Clerical /
Farmer Professional P- VAL
MEAN SD MEAN SD MEAN SD MEAN SD MEAN SD UE C 9.571 3.367 8.88 2.762 10 3.90 8.571 2.95 6.2 2.94 .251 D 7.642 2.341 7.111 2.494 9.222 3.45 7.571 2.47 9.2 3.11 .273 SC 8.714 2.672 8.5 2.307 9.333 2.06 10.64 2.84 9.8 3.03 .178 SS 8.785 2.224 7.777 1.957 7.666 2.39 8.785 2.54 11.2 3.11 .053 EA 11.285 2.332 11.111 5.016 10.88 3.98 10.07 3.60 9.6 1.81 .117 AR 4.357 1.864 4.111 1.745 3.333 1.87 3.714 1.26 2.2 0.83 .854 PPS 6.5 2.139 7.222 2.129 8.222 2.72 8.285 3.09 9.2 3.83 .205 PR 6.214 2.574 7.722 2.136 7.777 3.19 8.642 2.84 10.2 3.42 .048
Table 16: Comparison of Mean WOC with Relationship to patient
Relat ionsh ip to Patie nt
Mother Father Sibling Spouse P -
VAL
MEAN SD MEAN SD MEAN SD MEAN SD UE
C 9.088 3.146 8.181 2.713 10.33 2.081 8.75 4.048 .739 D 7.147 2.487 8.818 2.482 9.666 1.154 8.416 3.287 .129 SC 8.970 2.405 9.454 2.423 6.666 1.154 10.66 3.055 .050 SS 8.205 2.114 9.454 2.769 9.333 4.041 8.333 2.708 .473 EA 10.76 3.822 11.18 3.311 7.666 4.452 11.08 3.941 .211 AR 3.705 1.834 4.727 1.489 3.333 1.154 3.333 1.370 .528 PPS 7.382 2.593 7.818 2.926 6 1 8.5 2.907 .445 PR 7.823 2.610 7.181 3.789 6 1 8.75 2.632 .384
There is significant difference in self-controlling between caregivers with Fathers having higher mean scores on self-controlling.
Correlation of Experience of caregiving with Ways of coping Table 17: Correlation of Stigma with Ways of coping
Variable Correlation
Value P-Value
S vs C -.229 .079
D .043 .744 SC .073 .579 SS .170 .195 AR -.123 .348 EA -.018 .893 PPS .132 .313 PR .211 .106 S- Stigma
No significant correlation between stigma and ways of coping
Table 18: Correlation of Difficult behavior with Ways of coping Variable Correlation Value P-Value
DB vs C .344 .007
D -.181 .010
SC .937 .002
SS .002 .986 AR .315 .014 EA .189 .148 PPS -.342 .007
PR -.249 .055 DB- Difficult behaviour
Positive correlation is seen between Difficult behavior and Confrontive coping and self-controlling and it negatively correlated with
Table 19: Correlation of Negative symptoms with ways of coping
Variable Correlation Value P-Value
NS vs C .096 .465
D .884 .009
SC .073 .578 SS .089 .499 AR -.070 .593 EA .127 .335 PPS .046 .729
PR -.020 .880 NS- Negative symptoms
Significant correlation is found between Negative symptoms and distancing.
Table 20: Correlation of Problems with services with Ways of coping
Variable Correlation Value P-Value
PWS vs C .217 .096
D .312 .015
SC .145 .268 SS .284 .028
AR .073 .580 EA -.321 .012 PPS -.104 .427
PR .063 .634 PWS- Problems with services
Significant p < 0.05
Significant correlation is seen between Problems with services and Difficult behavior and seeking social support
Table 21: Correlation of effect on family with Ways of coping
Variable Correlation Value P-Value
EOF vs C .071 .592
D .118 .371
SC .050 .706
SS .203 .120
AR -.021 .875
EA -.182 .164
PPS -.237 .069
PR -.274 .034
EOF- Effect on family
No positive correlation between Effects of family and Ways of coping but it’s negatively correlated with positive coping.
Table 22: Correlation of Need to Backup with Ways of coping
Variable Correlation Value P-Value
NB vs C -.153 .242
D .073 .581 SC .067 .612 SS .161 .218 AR .086 .513 EA .044 .738 PPS -.150 .254
PR .015 .907 NB- Need to backup
No significant positive correlation between Need to back up and Ways of coping
Table 23: Correlation of Dependency with ways of coping
Variable Correlation Value P-Value
D vs C .153 .214
D .073 .242 SC .067 .581 SS .161 .612 AR .086 .218 EA .044 .513 PPS -.150 .738
PR .015 .254 D- Dependency
No significant correlation is seen between dependency and Ways of coping.
Table 24: Correlation of Loss with the ways of coping
Variable Correlation Value P-Value
L vs C -.258 .047
D .074 .572
SC .058 .658
SS -.018 .889
AR .102 .438 EA -.041 .755 PPS .211 .105 PR -.321 .012 L- Loss
Negative correlation is seen between Loss and confrontive coping and Positive reappraisal.
Table 25: Correlation of Positive personal Experience with Ways of coping
Variable Correlation Value P-Value
PPE vs C -.265 .040
D -.365 .004
SC .068 .608
SS .223 .087
AR -.387 .002
EA -.140 .284
PPS .335 .009
PR .538 .000
P <0.05 PPE- positive personal experience
Significant correlation is seen between positive experience and problem focused Coping. Negative correlation with confrontive coping, distancing, and Accepting responsibility.
Table 26: Correlation of Good Aspects of Relationship with Ways of coping
Variable Correlation Value P-Value
GAR vs C -.432 .001
D -.083 .529
SC .209 .110
SS .308 .017
AR -.361 .005
EA -.126 .339
PPS .580 .000
PR .646 .000
GAR- Good aspects of relationship.
Significant correlation is seen between Positive appraisal of caregiving and Planful problem solving and Positive reappraisal and negative correlation with confrontive coping and accepting responsibility.
Table 27: Comparison of Mean Expressed emotion and GHQ with male and female caregivers
SEX Male Female p-
value Mean SD Mean SD
EOI 16.91 3.902 21 4.52 .001 CC 18.73 5.138 22.76 6.590 .017 GHQ 16.50 4.867 17.45 5.401 .500
EOI- Emotional over involvement, CC- Criticism
Significant Difference is seen in between expressed emotion and gender, High Emotional over-involvement and criticism is seen in females. It is represented in the box plot below.
Table 28: Comparison of Mean GHQ and EE with Relationship to patient
Relation ship to Patient
Mother Father Sibling Spouse P - VAL
MEAN SD MEAN SD MEAN SD MEAN SD UE
GHQ 15.64 5.391 17.67 5.065 17.75 6.807 14.7 4.770 .775 EOI 18 6.198 19.33 4.817 20.08 4.163 17.29 7.465 .112 CC 16.64 4.556 18.67 2.73 18 5.033 22.94 5.24 .026
EE- Expressed emotions EOI- Emotional over involvement, CC- Criticism.
Significant difference is seen in criticsm and relationship to patient
Table 29: Comparison of Mean GHQ and EE with Education
Educat ion
ILLITERATE PRIMARY SECONDARY GRADUATE P - VALUE MEAN SD MEAN SD MEAN SD MEAN SD
GHQ 17.00 5.120 17.29 5.33 13.80 4.89 11.00 6.53 .420 EOI 23.68 5.083 19.13 6.421 16.80 6.064 18.75 3.962 .014 CC 20.68 4.928 18.61 4.473 16 4.732 24.88 2 .061
Significant difference is seen in Expressed emotion and Education of the caregiver.
