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INFLUENCE OF A CHILD’S CHRONIC ILLNESS ON FAMILY DYNAMICS AS PERCEIVED BY FAMILY MEMBERS/CAREGIVERS IN TEACHING HOSPITALS

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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.

The second construct which is family flexibility is defined as the amount of change in its leadership, role relationships and relationship rules. Balanced levels of family cohesion and flexibility are hypothesized to be related to family functioning. When a family has a child with chronic illness, disintegration of usual family patterns and roles as well as changes in family routines occur. (Wilkins and Woodgate, 2005). This also often necessitates a change in life style (Kozier et al, 2008). Interactions may change so that the ill child or family members may need to change diet, activity and exercise and rest and sleep patterns, in addition to participating in treatments and taking medications.

Family flexibility and changes in roles facing the crisis might become heavier burdens to some family members than others (Y1, 2009). Families who are more flexible in modifying daily tasks have more positive outcomes than do those who are rigid (Radina & Armer, 2001). Gender, sex, age, stage of the illness have also been reported to influence flexibility in the family. For instance, mothers and/ older girl siblings may oversee to ill child hospitalization and care giving at home with other chores. Boss and Couden (2002) also asserted that there may be ambiguity about the roles, rules and boundaries in the family system as a result of the child’s illness especially in the early stages, when the family members are in denial stage and physicians express optimism.

Family communication _ the third construct _ such as listening skills, speaking skills, self disclosure, clarity, continuity tracking, respect and regard are said to facilitate family dynamics. Olson (2000), noted that family communication helps the family make a balance in cohesion and flexibility. Studies showed that many families affected by childhood chronic illness report reduced family communication. The communication problems were associated with several underlying thought processes such as avoidance of psychological distress, desire for mutual protection and belief in positive thinking (Zhang and Siminoff, 2003). Communication is also influenced by the family culture (Olson, 2000; Stafford, 2004).

Chronic illness of a child in the family results to stress and anxiety which may consequently lead to disruption in communication patterns. Messages may be disjointed with poor co-ordination. There can also be inability to remember information that has been provided coupled with short tempered responses accompanied by rebuking or nagging (Ubalua, 2007). Kozier et al (2008), opined that verbal communication may be incongruent with non-verbal messages. Power struggles may follow suit, evidenced by hostility, anger or silence.

Yi (2009), in his own view, reported that families facing crisis like child’s chronic illness, change in communication patterns and make shifts in the family structure. Reduced family communication is seen in families affected with childhood cancer. Also communication between couples, parents and well siblings as well as with the sick child was found to be deteriorated. Friedman (2002), asserted that when families do not discuss important issues during chronic and life threatening illness, emotional distancing in family relationships results and family stress increases which also affect the health of the family and its members.

The responsibility of caring for a chronically ill child, can also strain marital relationships. Marital satisfaction can be compromised because the communication process between the spouses may be hampered, and there is less ‘down-time’ together (Berge & Patterson, 2004). Mothers sacrifice their relationship with their spouse and other healthy siblings while expending a lot of time and energy in caring and co-ordinating the regimen of the sick child (Berge & Patterson, 2004). Patterson and Garwick (2004) also asserted that for those families who provide care for the ill child, there is loss of family privacy, reduced spontaneity of life, time taken away from other family members such as children. Thus, parents may have less physical and emotional time to spend with siblings to help them adjust to the effects of chronic illness on the family system.

However, these influences of child’s chronic illness on the family will depend on the nature of the illness, which ranges from minor to life-threatening, duration of the illness, residual effects of the illness, the meaning of the illness to the family, the financial impact of the illness and the effect of the illness on the future family (Kozier et al, 2008).

From the foregoing, therefore, it could be said that there is a possibility of a child’s chronic illness influencing the family dynamics – cohesion, flexibility and communication. And this may reflect on inadequacy of the care of this child by the family members and a break down in the family stability and homeostasis and other family members ability to cope. Hence, caregivers often neglect their own health care needs in order to assist their family members thereby causing deterioration in the caregivers’ health and well being and the entire family dynamics. (Given, Stommel Given, 2003; Jepson, Mccorkle & Adler, 2009; Schulz and Beach, 2009). Most times, these caregivers’ health are equally neglected by health professionals and significant others.

Health professionals lack of wholist attention to care givers and the whole family of chronically ill children is a serious gap in healthcare, since caregivers are hidden patients themselves. To this effect, they have suffered serious adverse physical and mental health consequences from their demanding work as caregivers since they pay less attention to their own health and healthcare. Furthermore, disruptions in family dynamics compound the stress induced by the demanding nature of caring for a chronically ill child thereby resulting in a breakdown in health with no immediate support system to rely on for coping. Schulz, Beach & Lind, (2001) asserted that declines in physical health and pre-mature death among caregivers in general have been reported. It is upon this premise that the researcher seeks to find out the influence of child’s chronic illness on family dynamics as perceived by a family regular caregiver.

 

Statement of Problem

According to Coffey (2006), approximately 18 million children have some form of chronic illnesses, and these children are cared for in the homes/families. Boyse, Bonjaoude, & Laundy (2008), also asserted that an estimate of about 15% to 18% of children in the United States alone live with a chronic health condition.

Here in Nigeria, particularly in Enugu-state, available data/statistics in medical records department of Enugu-State University Teaching Hospital ranked chronic illness among children between November, 2006 to December, 2008 at about 300 cases. Whereas at District Hospital Agbani, cases of children with HIV/AIDS alone between 2007 and 2010 was 201. Generalising, the above to other places in Nigeria, shows that the number of children with chronic illness is high.

The researcher also observed during her course of practice that hospitalized chronically ill children were often cared for by their mothers. The fathers and other siblings are left at home to their own fate. They sometimes visit the mother and sick child once in a while. Hence, there could be a possible interruption and gap in family dynamic. Moreso, available data reveal that caregivers/family members are hidden patients themselves with serious adverse physical and mental health; consequent from their physically and emotionally demanding work and reduced attention to their own health (Given, Stommel & Given, 2003).

Furthermore, most of the studies done on chronic illness and family dynamics were conducted in the western countries with their own families, cultural backgrounds and available support systems.  The findings of these studies indicate that child’s chronic illness often led to the disintegrations of usual family patterns and roles, as well as challenges the family’s sense of normalcy and stability and deteriorates family communication pattern.

In Nigeria where there is paucity of data on the influence of a child’s chronic illness on family dynamics, it becomes pertinent to investigate on this, bearing in mind that individual or families may be affected differently based on cultural and belief system which though disintegrating may still be valuable to a degree. But, considering this disintegrating African culture of extended family system and a more imbibed culturally stable female-male role and non-availability of support system for stressed families, will the family dynamics be affected as has been reported in the Western countries?

It is on this basis, that the researcher seeks to find out the influence of a child’s chronic illness on family dynamics as perceived by a family member/ caregiver in Enugu Metropolis using University of Nigeria Teaching Hospital and Enugu State University Teaching Hospitals.

 

 

Purpose of the study

The purpose of this study is to assess the influence of a child’s chronic illness on family dynamics as perceived by a family member/ caregiver in Enugu Metropolis.

 

Objectives of the study

The study specifically seeks to:-

  1. Determine the influence of a child’s chronic illness on family cohesion as perceived by a family member/caregiver.
  2. Determine the influence of a child’s chronic illness on the flexibility in the family as perceived by a family member/caregiver.
  3. Determine the influence of a child’s chronic illness on the communication pattern in the family as perceived by a family member/caregiver.
  4. Identify which of the construct of the family dynamics is mostly affected by a child’s chronic illness.

 

Research Questions

  1. How does a child’s chronic illness influence the family cohesion as perceived by a family member/caregiver?
  2. How does a child’s chronic illness affect the family flexibility as perceived by a family member/caregiver?
  3. In what ways has a child’s chronic illness affected the family communication patterns as perceived by a family member/caregiver?
  4. Which of the family construct is mostly affected by a child’s chronic illness?

Significance of the Study

The findings from this study will be relevant to the nurses and counselors as well as the social workers, caregivers and the   policy makers.

To the nurses and counselors, the information derived from the findings of this study will empower them with knowledge and understanding of the conditions suffered by the members of families of chronically ill children. With this knowledge, they will health educate and counsel these hidden patients and in collaboration with them plan, implement and evaluate better co-ordinated care.

Based on the adoption of the co-ordinated care, there will be increased family tolerance and coping among the family members who would now work collaboratively to make decisions regarding day-to-day care and activities. These will result in families maintaining normalcy and then be able to continue in their developmental growth while contributing meaningfully to the increased life expectancy of the chronically ill child and society at large. The counselors also will advise the family on issues which will help to relieve their burden. For example the use of joint problem sharing as a coping strategy may be encouraged to ensure that some family members are not overwhelmed; thereby rectifying the much imbibed female role of caregiver in our African families. Also, their advice when adopted can act as a means of emotional outlets and promotion of family communication as a way to ease the silent tension among family members- thus increasing family functioning.

Again, information from the findings of this study will be an eye opener to the other health care providers to direct their attention to the family dynamics of families with chronically ill children as these may impact on the well-being of the members.

Information from the findings of this study if utilized by health care providers/social workers will enable them to develop a framework for promoting comprehensive, co-ordinated, family-centred care for families of children with chronic illnesses via several support groups. It will also enable them to direct some of their budget towards the provision of needed expensive and special equipment for the care of these children; thereby lessen the financial impact of the illness on the family – leading to good family dynamics and functioning.

The information from the findings of this study may equally furnish the policy makers with the understanding of the state of jeopardy which some of the members of families of chronically ill children who are public servants are into. This will motivate them to make policies that will make life easier for them. For example, giving of sick leave/off, half-day work, free medical services as well as payment of salaries as at when due.

It will also offer information about siblings with chronic illness and family dynamics to family researchers, clinicians and practitioners so they can create specific interventions for these families.

 

Scope of the Study

This study is delimited to a family member/ caregiver of chronically ill children in Enugu Metropolis using University of Nigeria Teaching Hospital and Enugu State University Teaching Hospitals in Enugu-State. It is also delimited to the influence of a child’s chronic illness on family dynamics and specifically to determining the influence of a child’s chronic illness on family cohesion, flexibility and communication as well as identifying which of the family dynamic constructs that is mostly affected by a child’s chronic illness.

 

Operational definition of terms:

  • Child’s chronic illness – A child between 0-18years old diagnosed with health related state (congenital or otherwise), lasting a long time for at least three months. The symptoms of the illness affect his/her normal activities of daily living, school’s activities, relationship with peers, roles and routines of the child and family; and sometimes leaves residual effects, complications or deformities. For example sickle cell diseases, HIV/AIDS, congenital heart disease, cancer, Asthma, DM.
  • Family dynamics – in this study describe how members of a family unit interact with each other, in other words called family functioning. In this study, family dynamics will be explained in terms of family cohesion, flexibility, and communication.
  • Influence of child’s chronic illness on family dynamics – This deals with how a child’s chronic illness can affect the family functioning (activities) in relation to family cohesion, flexibility and communication which can be negative or positive.
  • Influence of child’s chronic illness on family cohesion –In this study deals with how a child’s chronic illness can affect the relationships and family member’s love for one another as well as their method of expression of love and affection. In this study it could be affected either positively or negatively. For example, positively in form of rate of closeness; better understanding, empathy, supportiveness, compassion, patience, sensitivity etc. Negatively as separateness, isolation, neglect, loneliness etc.
  • Influence of child’s chronic illness on family flexibility –In this study deals with how a child’s chronic illness affects the way family members change roles, rules, responsibility and decision making patterns to accommodate change. In this study it could be affected positively or negatively. The influence could result to disintegrations, disruption, insecurity, anxiety etc, when negative and joint problem solving, delegation, sharing etc when positive.
  • Influence of child’s chronic illness on family communication – Is seen in this study as the way by which the child’s chronic illness affects the level of flow of information between the family members; using all the means of communication both verbal and non-verbal. Influence could result in reduced communication, avoidance, distraction, lack of concentration, silence, anxiety, tearfulness, mood changes etc (negative) and cheerfulness, smiles etc (positive) as well as circumstances affecting how message is being communicated – anger, nagging, temper tantrums,
  • Family cohesion – is referred to as the relationship ties and family member’s love for one another as well as their method of expression of love and affection. E.g. closeness, supportive to one another’s needs and feelings, sharing and doing things together, respect for one another’s feelings and privacy, empathy, co-operativeness, acceptance, cheerfulness, togetherness etc. Negative cohesion – separateness, isolation, neglect, loneliness, lack of feeling and respect for one another, lack of care unacceptability of the sick child, guilty feelingsetc.

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