Acute and chronic asthma in children is a growing cause of concern and attention to healthcare professionals. Statistics indicate that there are more than four million children in the United States, who are affected by asthma and this is the “most common illness affecting pediatric population (Kurnat & Murphy, 1999).
Research confirms a rapid increase in the “mortality and hospitalization rates” of the individual below the age of twenty-five years which is apparent by the 40% increase which amounts to about 2.7 million children, in the number of people diagnosed with asthma, a number which continues to escalate (Centers for Disease Control, 1996; Kurnat & Murphy, 1999). Studies also indicate an increase in the number of people affected by asthma, particularly, the pediatric population (Wamboldt & Wamboldt, 1996, In; Kurnat & Murphy, 1999).
This paper aims to understand and explore the perspective of families who deal with patients with chronic asthma, particularly children. Through the interview, the article aims to gain an understanding of the suffering of family members who deal with patients with chronic asthma and to use this knowledge and personal experience in alleviating some of the sufferings of these families. The primary objective of the article is to acquire first-hand knowledge of how families deal with the chronic illness of their family member/s and how this has a reciprocal effect on the patient as well as the family. To gain knowledge of these and other issues surrounding families with children having chronic asthma, an interview was conducted and several questions were asked.
When I questioned the parents whether they knew the exact meaning of the term chronic asthma, they replied in the affirmative and stated that asthma is a disease in which there is difficulty in breathing. They also said that the disease causes breathlessness in patients and there are severe such attacks. In their response, the interviewees did not use the appropriate medical terminology to describe chronic asthma.
They gave me an account of the illness narrative which is substantially different from a medical narrative. In medical terms, asthma is a “lower respiratory tract condition” which is marked by a “combination of factors including airway inflammation, mucous hypersecretion, and spasm of the bronchial smooth muscle” (Kurnat & Murphy, 1999). These factors result in chronic symptoms such as “chest tightness, shortness of breath, wheezing, and increased sputum production” (Kurnat & Murphy, 1999).
I questioned both parents what it is like for them to deal with the chronic asthma of their five year old daughter. They were very sorry for their little baby and said that they found it very difficult and depressed to deal with the illness of their son. Explaining in detail, the mother stated that the child had to be restricted from doing normal activities which other children engage in, and finds this frustrating.
As a result of this frustration, the child has become very stubborn and due to his tender age, fails to understand that his health does not support normal activities like other children. The child is unable to play for long hours and has to be with either parent at all times. The parents are also feeling the pressure in their marital life because they are at all times worried about the situation of the child and have to keep him under their check always. The parents are aware that the attack could be triggered due to certain conditions but are not sure why and how exactly this occurs.
Although they are aware of the normal activities and situations to be avoided, they do not have conscious knowledge of the fact that the triggers of the asthma attack differ, depending on the “immunologic function and sensitivity” of the child (Strunk & Fisher, 1996). The triggers could be due to certain allergies in the child such as cats, dogs, molds, cigarette smoke, paint or anything as common as certain types of trees and dust (Strunk & Fisher, 1996). The child could also be allergic to physical situations such as exercise, cold temperature and infections (Strunk & Fisher, 1996) which the parents were aware of.
The family is also experiencing financial difficulties, since the mother cannot assume a full time well-paying job and so much money is spent on medication and visits to doctors. This response of the parents is a common psychosocial issue encountered by children with chronic asthma and their families, particularly the parents (Kurnat & Murphy, 1999). Research confirms that families and children with acute asthma experience several issues including strain from playing the role of a caring and protective parent or family member and additional stress related to financial difficulties and problems, which occurs due to the added costs of medications and visits to doctors and hospitals (Thomas, 1987).
The Center for Children with Chronic Illness and Disability (1996) also affirms that parents of the child, the couple could encounter difficulties in their relationships due to the additional burden and stress of looking after a chronically ill child and due to the “restricted socialization” which is part of the life of many families who have children affected by chronic asthma (Kurnat & Murphy, 1999).
The family of three which includes both parents and the chronically ill child are seriously affected by the child’s disease, psychologically, socially and financially. When I asked them how severe the illness of their child is and how much they and their relationships have been affected due to the disease, they appeared to be very disturbed. Initially of course, they put up a brave front, but on further investigation, the mother revealed the turmoil in their lives due to the severity of the illness. It was touching to hear that the impact of the disease on their lives (Donnelly, 1994).
The incessant problems which the child and parents face includes taking time away form their regular activities such as work, loss of sleep due to the severity of the attacks and frequent hospitalizations have had a significant impact on their and their child’s life (Strunk & Fisher, 1996) which they claim not be normal anymore. The mother would like to continue with her school and complete her education so that she has better career prospects, but is unable to do anything due to the illness of the child and the severity of the attacks, which she states “come in rain or sunshine”. The primary concern of the parents is the stress and anxiety which they feel the child undergoes (Ryan-Wenger & Walsh, 1994), day after day, due to being unable to carry on a normal life like other children.
The parents mentioned that their child is not developing as a normal child a fact affirmed by researchers (Strunk & Fisher, 1996) who assert that the occurrence of asthma has numerous psychosocial effects on the suffering child because children feel socially restricted by parents and caretakers due to the feared triggers which may initiate dangerous attacks in them. Studies have been conducted on children with chronic asthma and it has been found that children could also face several other psychological problems due to feelings of embarrassment about taking their medications and due to their restricted lives, could feel themselves to be different from other children (Yoos & McMullen, 1996).
The parents affirmed that the attendance of the child at school suffers enormously as he has to stay away from school during “those days” when he faces a severe attack and has no stamina or energy to perform regular tasks. It has been indicated that children with chronic asthma are likely to miss school more often than other healthy children (Moore, Weiss, & Sullivan, 1996).
I questioned the family what they regarded as the greatest challenge at that particular time and both parent differed in their opinion. The father was seriously concerned about the financial reserves which were depleting rapidly, without which he feared that their son would not be able to get optimal care and treatment. He feared that the recession of the economy has left him feeling insecure about his job and was he to lose his job he would have nowhere to go.
The mental state of the father is terribly depressed and he has little in life to pin his hopes on. Once an athlete and a highly social person, the father is now bogged sown with responsibilities of the house and a chronically ill son, who has become his top priority in life. He does not meet his friends anymore and does not go to play football with them, which he loves. The mother was also very concerned and worried most about the ailing child, she is also worried about their martial relationships which she feels is not very strong as it used to be. She feels that there is greater “conflict” which research confirms stems from the high stress levels among family members (Austin, 1990).
When I asked the parents what their greatest source of strength was in the given situation, surprisingly, they replied almost collectively naming God and their child as their primary source of strength. This affirmed my judgment that the family is united and the members love one another but are struck by the demands of time and resources due to the chronic disease of their son. Several studies have noted the negative impact of chronic asthma on the familial lives due to the “excessive demands on parental time and energy” (Kurnat & Murphy, 1999). Fears of the child’s death, anxiety, additional stress and work have a major influence on parents who look after children with chronic asthma (Jerrett & Costello, 1996).
When I questioned the children about the best advice they received from anyone, friends or medical professionals, the mother stated that a nurse had educated her about the condition and management of asthma and this knowledge about the disease had helped her tremendously. Initially she would fear and panic whenever the child suffered a panic attack, but following the advice of the “angel” nurse, she is now in better control of the situation and does not fear it. Research findings indicate that when knowledge about the disease is provided to parents and care givers, including the basic information about the disease itself, the medication and the requirements in terms of treatment, there is a substantial reduction in the stress and anxiety levels of parents and they are able to better cope with the illness and care of their child (Jerrett & Costello, 1996). Helping parents in managing the child’s enables them to develop enhanced coping strategies and reduces the strain between them (Deaves, 1993).
I think that all the questions I asked the parents would be useful contribution to the nurses who are engaged in the health and care of children with acute and chronic asthma. Nurses have the opportunity to help and support families so that they can develop crucial skills to manage the care and treatment of their child. By understanding the perception of the family to the disease and the ailing child, nurses would be better equipped to provide meaningful support and understanding to such families of children with chronic asthma so that there are reduced levels of stress and anxiety which would facilitate in the deliverance of enhanced care and attentions to the child with chronic asthma.
References
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