ABSTRACT
Chronic illness is the term used to describe diseases which have non-reversible pathological condition that cannot be corrected by medical intervention. Examples include sickle cell disease, cancer, Aids, bronchial asthma among others. Many children are affected by chronic illness and cared for in the homes. The diagnosis of chronic illness in a child evokes a lot of influences on the dynamics of both immediate and extended families. This study investigated the influence of a child’s chronic illness on family dynamics as perceived by family members/caregivers in Enugu metropolis. Descriptive survey design of qualitative and quantitative was used. Four objectives of the study were to: determine the influence of a child’s chronic illness on family cohesion; determine the influence of a child’s chronic illness on family flexibility; determine the influence of a child’s chronic illness on the communication pattern in the family and identify the construct of the family dynamics mostly affected by a child’s chronic illness. A population of four hundred (400) adult family members/caregivers who met the inclusion criteria was purposively selected. A 5 point Likert scale questionnaire with a reliability of 0.73 after the face and content validation was used for data collection as well as an in depth interview guide. Descriptive statistics of frequencies, mean and standard deviation including descriptive phenomenological transcription were used for data analysis. Findings revealed that a child’s chronic illness resulted in good family cohesion evidenced by love, concern, support, sensitive, closeness to one another that many were unhappy, moody, sorrowful, and even cried during times of their sick one’s crisis. On family flexibility, finding revealed decision making by parents with inputs from family members, adjustment in performance of roles, joint problem solving with mother and older female siblings doing more work. The family communication was cordial and accommodating but a significant number reported reduced verbal communication characterized by irritability and disjointedness when asked questions. Family flexibility is the most affected dynamic construct. In conclusion, the participants perceived a lot of influence by the child’s chronic illness. In recommendation, there is need for knowledge update on child’s chronic illness for families, caregivers, health workers as well as encouraging community based support networks for the chronically ill families to ensure good care for this vulnerable group.
TABLE OF CONTENTS
Title
Table of Contents
List of Tables
List of Appendices
Abstract
CHAPTER ONE: INTRODUCTION
Background to the Study
Statement of Problem
Purpose of the Study
Research Objectives
Research Questions
Significance of the Study
Scope of the Study
Operational Definition of Terms
CHAPTER TWO: LITERATURE REVIEW
Conceptual Review
Conceptual of Chronic Illness
Chronic Illness in Children
Families and Sibling of Families with a Child in Chronic Health Conditions
Concept of Family Dynamics
Concept of Family Cohesion
Concept of Family Flexibility
Concept of Family Communication
Influence of Child’s Chronic Illness on Family Cohesion, Flexibility and Communication
The Family System Theory
Empirical Review
Summary of Literature Review and Analysis of Empirical Review
CHAPTER THREE: RESEARCH METHOD
Research Design
Area of Study
Population of the Study
Sample
Inclusion Criteria
Instrument for Data Collection
Validity of the Instrument
Reliability of Instrument
Ethical Consideration
Procedure for Data Collection
Method of Data Analysis
CHAPTER FOUR: PRESENTATION OF RESULTS
Summary of Findings
CHAPTER FIVE: DISCUSSION OF FINDINGS
Discussion of Major Findings
Summary of the Study
Implication of the Study to Nursing
Conclusion
Recommendations
Limitation of the Study
Suggestion for further Studies
References
Appendices
CHAPTER ONE
INTRODUCTION
Background to the Study
Illness is highly subjective and it cuts across all stages of life. According to Kozier, Erb, Berman & Synder (2008), illness is a highly personal state in which the person’s physical, emotional, intellectual, social, developmental or spiritual functioning is thought to be diminished. The crisis of childhood illness affects members of the nuclear family and to a various degree, members of the extended family. This is moreso in chronic illness which according to Miller (2002), is a state caused by non-reversible pathological condition that cannot be corrected by medical intervention. This ultimately results in an altered health state with lingering disability that cannot be easily treated.
The National Centre for Health Statistics (2007), highlights four characteristics of chronic illness as follows:-Time period:- an illness is chronic if it exceeds three months. Life style:- an illness is chronic if it is long term and affects and interferes with the patient’s functioning in the physical, psychological or social arena; quality of life:- an illness is chronic if the symptoms begin to affect the normal activities, roles and routines of the patient and the patient’s family; symptom management:- an illness is chronic if it involves symptom management. Due to the incurable nature of the illness, symptoms are persistent and long term and the patient will be left with residual effects of the condition. Ultimately, the goal is to manage the symptoms on a daily basis.
A chronically ill child is a young immature person (0-18years) with long lasting disease and as such incapable of caring for him or herself. Therefore, there is usually an exhaustive array of tasks that must be accomplished on a daily basis. Some of these activities are very ultimate, such as assisting with the patient’s personal care and hygiene. Other tasks are more practical such as shopping, making meals, running errands, doing laundry, house-keeping and helping with the patient’s paperwork (Holroyed and Mackenzie, 2005).
Thus, family care givers often talk about experiencing role strain, which was influenced by feeling in the middle when making decisions about the care of the chronically ill family member. They also speak of a ‘burden of responsibility’ in assuming a multitude of tasks and a ‘changed identity’ due to new roles related to care giving. (Hodgkinson and Lester, 2002). Therefore, many chronic illnesses such as sickle cell disease, HIV/AIDS, cancer etc that affect the child also affect every member of the nuclear family and to various degrees, members of the extended family. Indeed all life-threatening events such as these child’s illnesses are a source of challenge to the entire family.
McGrath (2001) in Yi (2009) noted, for example, that a childhood cancer challenges the family’s sense of normalcy and stability and affects family relationships either negatively or positively. According to Wilkins and Woodgate (2005), these challenges may lead to a disintegration of the usual family patterns and roles.
The above implies that the family being a system; cannot be fully understood by studying individual family members only because adding up the information on individual members cannot be a total explanation of the entire family system (Bavelas and Segal, 2002). The family should thus, be viewed as an interactional system in which the whole is more than the sum of its parts. This approach focuses simultaneously on individual members and the family as a whole at the same time. This perspective always implies that when something happens to one family member, the other members of the family system are affected. This is because family systems are an organized whole, therefore individuals within the family are interdependent. However, when a child’s chronic illness sets in, the inter-dependability of the family members becomes infringed into, thereby, affecting the family dynamics.
Family dynamics refers to the ways in which family members relate to one another. Because humans are capable of changing, and family members take part in different experiences, the dynamics within a family never remain the same. Things that contribute to family dynamics are:- age of the family and its members, history of the people in the house hold, roles of each family members, that may be affected by things like chronic illness, rules that govern behaviours and interactions within a family as well as the family communication.
Osborn (2000), identified three central and inclusive constructs that are important in family dynamics and which may be influenced by the chronically ill child in the family. These are family cohesion, family flexibility, and family communication.
Family cohesion is seen as togetherness that the family members have with one another (Olson, 2000). In other words, it is how the family members feel close or distant to one another. Studies show that families who have already had strong relationships before chronic illness tend to get closer to one another because of the illness (Slopper, 2000). Moreover, highly cohesive families seem to have more favourable psychological functioning and adjustment (Horwitz and Kazak, 2004). Mccubbin, Balling, Possin, Frierdich & Bryne (2002), also stated that social support from health-care team, the supportive community and workplace help the family recover from chronic illness.....
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