A Study to Assess the Experiences of Parents Caring for Children with Congenital Heart Disease

“A study to assess the experiences of parents caring for children with congenital heart disease

at selected hospitals in Bangalore"

by

ASHA ANIE CHACKO

Dissertation Submitted to the

RajivGandhiUniversityof Health Sciences, Karnataka, Bangalore

In partial fulfillment

of the requirements for the degree of

1st YEAR MSc NURSING

in

CHILD HEALTH NURSING

Under the guidance of

HOD, Child Health nursing

COLUMBIACOLLEGE OF NURSING

BANGALORE

2011-2012

RAJIVGANDHIUNIVERSITY OF HEALTH SCIENCE

DECLARATION BY THE CANDIDATE

I hereby declare that this dissertation/thesis entitled “A study to assess the experiences of parents caring for children with congenital heart disease at a selected hospitals in Bangalore"is a bonafide and genuine research work carried out by me under the guidance of Name & designation of the Guide.

CERTIFICATE BY THE GUIDE

This is to certify that the dissertation entitled “A study to assess the experiences of parents caring for children with congenital heart disease at selected hospitals in Bangalore”is a bonafide research work done by ASHA ANIE CHACKO in partial fulfilment of the requirement for the degree of 1st YEAR MSc NURSING.

ENDORSEMENT BY THE HOD,PRINCIPAL/HEAD OF THE INSTITUTION

This is to certify that the dissertation entitled “A study to assess the experiences of parents caring for children with congenital heart disease at selected hospitals in Bangalore" is a bonafide research work done by ASHA ANIE CHACKO under the guidance of Name & designationof the Guide.

COPYRIGHT

Declaration by the Candidate

I hereby declare that the Rajiv Gandhi University of Health Sciences, Karnataka shall have the rights to preserve, use and disseminate this dissertation / thesis in print or electronic format for academic / research purpose.

©RajivGandhiUniversity of Health Sciences, Karnataka

ACKNOWLEDGMENT

I would like to thank the Almighty God for giving me wisdom and grace to complete this work successfully.

I express my sincere thanks to my husband James and my parents who constantly encouraged me and supported me throughout.

I extend my sincere thanks to Mr. S.Reddy, chairman, Columbia college of nursing for motivating me and giving an opportunity to study his esteemed institution.

I am thankful to Mrs. Radhika.K , Principal, Columbia college of nursing for her valuable help and guidance in my dissertation work.

I am indebted and would like to convey my deep sense of gratitude to my guide ______, for her guidance and encouragement throughout my dissertation work.

I specially thank all the respondents for their patience and co-operation during my research work.

LIST OF ABBREVIATIONS USED

BSI - Brief Symptom Inventory

CHD- congenital heart disease

HRQOL - Health related quality of life

MANOVA – Multivariate analysis of varience

NICU - neonatal intensive care unit

PCOD - Parents of children with other disease

PCCHD - Parents of congenital heart disease children

PHC - Parents of healthy children

PTSD - Posttraumatic stress disorder

QOL – Quality of life

SCL - Symptom Check List

RAJIVGANDHIUNIVERSITY OF HEALTH SCIENCES, KARNATAKA,BANGALORE

ANNEXURE-II

PROFORMA FOR REGISTRATION OF SUBJECT FOR

DISSERTATION

6. BRIEF RESUME OF THE INTENDED WORK

Introduction

A new baby is the beginning of wonders, hopes and dreams and becoming parents is one of life’s greatest blessings. A parent’s dream of giving birth to the perfect child but the birth of a child with congenital heart disease challenges those dream. This forces families to deal with a crisis for which they may be completely unprepared. Discovering one’s child has a disability causes major stress, this can disrupt the total family functioning.

Congenital heart defects (CHD) are the most common form of birth defect. Congenital heart disease is the presence of structural or functional abnormality of the heart at birth. Heart defects are three times more common than muscular dystrophy. Five times more common than childhood cancer and thirty times more common than cystic fibrosis. More infants die of heart defects than any other birth defect. Approximately one in every 100 to 120 babies is born with a congenital heart defect. Nearly 180,000 children are born with heart defects each year in India, of which nearly 60,000 to 90,000 suffer from critical cardiac lesions requiring early intervention. Approximately 10% of the present infant mortality in India may be accounted for by congenital heart diseases alone. World Health Organization had projected that India would account for 60% of the heart patients by 2010.

From birth the child has an ability to respond to the environment, which influences the interaction between mother and child. If this attachment is interrupted, the child's emotional development is negatively influenced. When the child needs care in a neonatal intensive care unit (NICU) it is difficult to establish contacts between mother and child. Separation from the child is found to be the most difficult aspect for mothers when their newborn child is hospitalized in a NICU.Parents of children with complex congenital heart disease (CHD) have the difficult task of understanding their child’s medical condition and learning how best to care for them. Unfortunately, many parents of children with CHD have significant knowledge gaps that may impact care, possibly due to a lack of understanding or remembering important instructions. Some hospitals provide excellent detailed care manuals upon discharge from surgery to help families care for a child post operatively..

Increasing numbers of children approximately 200 children per 100,000 population require intensive care annually, because of advances in paediatric therapeutic techniques and a changing spectrum of paediatric disease. These children are especially vulnerable to a multitude of short- and long-term negative emotional, behavioural, and academic outcomes, including a higher risk of posttraumatic stress disorder (PTSD) and a greater need for psychiatric treatment, compared with matched hospitalized children who do not require intensive care. In addition, the parents of these children are at risk for the development of PTSD, as well as other negative emotional outcomes (eg, depression and anxiety disorders). There has been little research conducted to systematically determine the effects of interventions aimed at improving psychosocial outcomes for critically ill children and their parents, despite recognition of the adverse effects of critical care hospitalization on the nonphysiologic well-being of patients and their families.

The purpose of the study was to evaluate coping and psychological functioning of parents of children prenatally or postnatally diagnosed with congenital heart disease.Parents of 10 infants prenatally diagnosed by foetal echocardiogram and 7 infants postnatally diagnosed with severe congenital heart disease completed the Brief Symptom Inventory (BSI) at the time of diagnosis, at the time of birth and 6 months after birth. Prenatal and postnatal groups were compared to each other and to BSI norms. Although both groups scored higher than test norms at the time of diagnosis, they did not differ significantly from each other. Six months after birth, the postnatal group scores did not differ from test norms, but the prenatal group scores were still significantly higher than test norms. The severity of the child's heart lesion at diagnosis was related to parental distress levels; parents with children with more severe lesions had higher BSI scores.Results suggest the need to provide parents with psychological support, regardless of the timing of diagnosis. Parents of children with more severe lesions may be at risk for higher levels of psychological distress, particularly over time.

Parents and other significant caregivers play an important role in children’s development. On parenting an enormous body of literature supports the important role of parents in shaping the development of children. The Nurture Assumption, that parental influence on child development may not be as great as the influence of genetic predispositions and the influence of peers.In view of genetic studies suggesting that experiences children have with parents and others can modify genetic influence and of the substantial body of literature showing the importance of parent-child relationships for a child's development. This large body of literature suggests that it is the quality of the parent-child relationship that is particularly important in understanding the course of the child's development; and that the parent-child relationship is co-constructed by the parent and the child, not something that comes from the parent alone. In this article, consideration is given to what aspects of parent-child relationships are associated with the development of competence and well-being in children and how the parent-child relationship changes over time and with development. Also considered are the factors that contribute to these qualities of parent-child relationships.

The aim of this exploratory study was to understand the negotiation of care as experienced by the parents of technology-dependent children in a hospital context. Qualitative semi-structured interviews were undertaken with a group of six parents. Parents felt that their roles as parents were not considered enough by nurses and they tended to be seen as carers, not parents. Negotiation of care was not always apparent. Instead, nurses often made assumptions about parental involvement in care. Parents wanted to carry out care when in hospital, but were not always given choices. Parents also reported a desire for more confident nurses. Suggestions for further research in this area are offered .

This study highlights the need to gain insight into parents' experiences, in order that nurses can provide care in a way negotiated to suit the individual family.

6.1 NEED FOR THE STUDY:

Congenital heart defects are among the most pervasive and serious chronic illnesses found in children. It is estimated that 8 of every 1,000 babies are born with a congenital heart defect. The defects are distributed among the entire population of children without distinction for social class or race and include a spectrum of severity ranging from minor defects that may spontaneously self-correct to more severe, even potentially life-threatening defects that require several surgical interventions. Children frequently undergo a series of palliative surgical procedures to ameliorate the defect. Due to significant advances in medical technology including innovative corrective surgeries, mortality rates for infants with congenital heart defects have decreased dramatically. As a result of these advances, caregivers of these children are subject to many potential stressors including the scheduling of frequent clinic visits, monitoring and limiting their child's activities, and administering medication. Thus, they must adapt to novel responsibilities in the care of their children as well as endure continued psychological and financial stressors associated with having a child with a potentially life threatening chronic illness.

The effects of childhood chronic illness on parents by examining the relationship between chronic illness in infants and parenting stress. Findings indicated that the parents of children with congenital heart disease reported greater amounts of stress than either parents of healthy infants or parents of children diagnosed with cystic fibrosis. Further, examined the association between the psychological adjustment of children with congenital heart disease, their mothers' perceptions of parenting skills, and the relationship between the mother and her child. Findings were that maternal perceptions were significantly associated with child psychological functioning rather than the severity of the cardiac defect.9

Thanks to today’s advances in medical technology and early diagnosis, most congenital heart defects can be corrected but to accept the fact that parents have given birth to a child who is less than perfect, who has a “defect” is a painful experience. The moment an infant is diagnosed with congenital heart disease parents experience a mixed feeling of shock, disbelief, anger, fear and often profound sense of sadness. Additional demands of raising a child with special needs that is apart from normal, exerts an extra strain on parents and chronic stress appear to reoccur for parents, throughout child’s lifetime as developmental milestones are not achieved at a typical pace.

Parental participation is integral to the preprocedure preparation process, starting with parental agreement to their child’s involvement. Children’s adjustments reflect a mutual and richly dynamic interplay of child-parent environmental factors over time. Therefore, goals for procedure preparation include addressing parental concerns and needs so that parents can be more emotionally available to their children. Before cardiac procedures, parents demonstrate significant levels of psychological stress and diminished coping abilities whether heart catheterization or heart surgery is planned. Parents may verbalize their fears directly or engage in behaviors that appear to communicate anxiety, such as agitation and apology. Parental behaviors that enhance children’s coping abilities include engaging in humorous conversation, talking about topics unrelated to the procedure, and promoting the child’s use of coping skills. Conversely, parental criticism, anxiety, and excessive verbal reassurance can increase children’s stress.

Interventions aimed at addressing parental concerns regarding children’s hospitalizations have been effective in decreasing parental anxiety and enhancing child behavioral outcomes.Active parental participation in the preprocedure process also enhances the efficacy of a variety of preprocedure preparation methods, including preprocedure class, peer-modeling videotapes, or brief explanations by nurses.

Parent education regarding the sequence of events, sensory experiences, role expectations, typical child responses, and previews of procedures through play techniques decreases stress-related behaviours in children undergoing heart catheterization and surgery.Parents can provide positive reinforcement for coping strategies, act as supportive role models, and may function as “coaches” for cognitive behavioural interventions, such as relaxation exercises. Thus, engagement of parents in the preparation process is effective and offers practical benefits that are particularly important given the limitations of available preparation resources. Interventions aimed at facilitating parental coping are anticipated to be of particular importance for younger children (ie, preschoolers) because of their limited ability to use internal coping strategies.

Early studies document the efficacy of providing information about anticipated medical procedures, and this continues to provide the foundation for most hospital preparation programs. The goals of information giving are to promote a sense of mastery by enabling the child/parent to anticipate events, to facilitate child and parent understanding of the meaning/purpose of these events, and to correct misinformation. Information giving is congruent with information seeking as a dominant coping strategy for both adults and children and is enhanced by the provision of sensory descriptions. It is important to remember that some parents and children cope by avoidance and may experience increased anxiety when health information is provided. Although certain information may be deemed necessary, refocusing may be the most effective intervention for these individuals.

The family’s relationship with their child’s paediatric cardiologist and cardiovascular surgeon is paramount. Communication with these specialists provides the foundation for understanding the diagnosis, prognosis, and treatment options, including the need for invasive procedures. These physicians are also the leaders of the health care team and are thus in a pivotal position to foster a team approach that incorporates and values preprocedure preparation programs.

High incidence of congenital heart disease and parental stress motivated the investigators to undertake the present study.

6.2 REVIEW OF LITERATURE

The present study is undertaken to assess the importance of parents’ emotions and experiences following the treatmentof congenital heart children

Lawoko S and Soares J J examined differences in distress (i.e., depression, anxiety, and somatisation) and hopelessness (e.g., suicide ideation) among parents of congenital heart disease (CHD) children (PCCHD, n=1092), parents of children with other diseases (PCOD, n=112), and parents of healthy children (PHC, n=293). In addition, they determined the proportion of parents in each group whose scores in distress and hopelessness, respectively, exceeded norms for psychiatric outpatients (POPN) and depressed people, and identified determinants of distress and hopelessness among all parents, and the PCCHD. The parents completed a questionnaire about such areas as distress and hopelessness. The design was cross-sectional and data were collected during 20 consecutive days. PCCHD were generally at higher risk of distress and hopelessness. A significant number of parents, in particular PCCHD, reported levels of distress and hopelessness within/above POPN and depressed people, respectively. Mothers within all parent groups had higher levels of distress and hopelessness than fathers, with the highest levels among mothers of children with CHD compared to mothers in the other groups. Fathers of children with CHD were doing worse than fathers belonging to the other groups. There were no differences between PCOD and PHC. Variables such as employment status and financial situation explained more of the variation in distress and hopelessness among parents than the diseases of their children. They corroborated previous findings and provide new insights into the experiences of PCCHD that may be of importance when considering intervention. Further research concerning the parents, in particular PCCHD, at risk of developing psychosocial problems is needed.

A cross sectional study was conducted in Alexandria, Egypt in the two main hospitals that treat children with heart diseases. 400 parents of children with heart diseases were recruited and a comparison group (400) of parents of children with minor illnesses were included from both hospitals. Socioeconomic and disease related data were collected; SF 36 was used to collect data regarding the QOL. MANOVA was used to compare the SF-36 scores between groups and to explore the impact of different variables. Results In all SF-36 subscales, parents of children with heart diseases reported significantly poorer HRQOL, except for pain subscale. The most striking differences were for General Health, Vitality and role limitation physical. Factors that had a significant impact of HRQOL were severity of illness, type of heart disease in addition to age of child, having multiple children, financial situation and presence of co morbid condition. The mean scores for different domains were the lowest for younger age, rheumatic heart disease and female children. They concluded QOL of parents of children with heart diseases was significantly impaired and it was influenced by several factors; mainly related to the clinical status of the child. Psychological status, social support and reassurance of the parents should be considered when making treatment decision for their children.