Jie Ren; Jingyi Deng; Helana Afroz
The Family with Chronically Ill Children
Chronic disease is a condition that lasts for a very long time, usually more than three months and cannot be cured completely, although some chronic diseases can be controlled or managed through lifestyle change and certain medication. The data presented on Michigan Medical website (2012) shows that 15% to 18% of the children in the United States live with chronic disease including Asthma, Diabetes, Cancer, Cerebral palsy and chronic pain. Children diagnosed with a chronic illness (CI) often experience physical, psychological, and social disadvantages (Clarke & Eiser, 2004).
One family member with chronic disease affects the whole family. Their families feel helpless facing the unpredictable future of their children. For example, the Michigan Medical website (2012) shows that divorcing tends to be more common in the families with chronically ill children, because of the high pressure of parenting these children. This paper will use three theories to explore the effect of children’s chronic disease on family as a whole and its individual members, and how the family can function when they face a stressful array of problems related to chronic disease. To this end, we will first discuss the symbolic theory, the human ecological theory, and family stress theory, respectively. Then we will discuss which theory provides a better approach to investigate families with chronically-ill children depending on researchers’ focus on the issue.
Symbolic interactionism is a sociological perspective (Smith &Hamon, 2017). It focuses on how individuals use and interpret symbols and create meaning in their lives and society. In family-dynamic studies, the symbolic interactionism explores how meaning is changed and negotiated in the families, how individuals perceive self and other family members according to their roles, and how the rituals and societal norms affect the families.
The research on children with chronic diseases, using symbolic interactionism as the theoretical framework, mostly focus on two main parts: first, how children interpret their roles and chronic disease through treatments, and second, the interactions and communications between the caregivers and the family members with chronically-ill children.
The first main theme of Symbolic Interactionism is that meaning is the central element of human behavior (Blumer, 1986). We live in a symbolic world; we assign meanings to different objects; and behave according the meanings we have already assigned. In Woodgate’s study (1998), one adolescent with arthritis dealt with the pain by referring to her arthritis as the “friend.” From her action, we see the meaning she assigned to her illness, and the concept of a “friend” rather than an “enemy” determines the way she reacted to the pain which strongly supports the first theme of symbolic interactionism.
One of the assumptions based on this theme is that the meaning is learned and interpreted through our interactions with others. Symbolic interactionism allows us to see how caregivers and children are guided by the meaning they assign to the disease and to their roles through their communications (Woodgate, 1998). Through the verbal and nonverbal communication, people understand their roles and know how to behave based on others’ expectations. Sousa, De Oliverira Costa, Dupas, and Wernet (2013) mention effective dialogue between different levels of health care is indispensable and important to a comprehensive care. Most special health care teams communicate with families and then they understand their roles and behave according to the meanings or expectations that families assign to their roles, such as the kinds of care the families need and how frequently they should visit and provide feedback.
Similarly, the study by Baltor, De Matos, Wernet, Ferreira, and Dupas. (2013) indicates the importance of communication skills. It demonstrates that communication with the families of the chronically-ill children should be reconsidered, mainly regarding health care professionals’ interpersonal skills. One of the families in the study indicated that the caregiver told them to do this or that, but the instructions were not clear and eventually, the family members were confused and did not know what to do (Baltor, De Matos, Wernet, Ferreira, &Dupas, 2013). Therefore, we see ineffective communications and poor communication skills may threaten humane and comprehensive care.
Moreover, through interaction, chronically-ill children can also understand their disease and their treatments better. In a study by De Matos, Canela, Silveira, and Wernet, (2014), the children suffered from the lack of dialogue and explanations. The explanation they received about their treatments was just “It’s for your own good” (p.128). Lack of communication makes these children to feel confused and unaware of the information about their disease (Woodgate, 1998). The findings of Woodgate’s study (1998) supports this assumption as well. They argued that the interactions between chronically-ill adolescents and their families and friends helped families understand the degree of pain experienced by the adolescents and the symptoms’ severity, when they experience the pain. Generally, through interaction with other people, caregivers find out about the families’ needs and expectations, and they start to interpret the meanings and understand the disease.
Blumer (1986) believes that the second theme is self-concept which means developing the sense of self through interaction with other people. In a study by Sousa et al.’s (2013), the special health care teams interacted with family members through listening to their experience and reframing their offered care through identifying the family’s need. Therefore, through interaction with the family members, the health care team could understand their self-role better.
Moreover, according to Thomas theorem, “If people define a situation as real, they are real in their consequence” (Smith &Hamon, 2017，p.13). This relates to the study by Baltor et al. (2013), in which caregivers feel stressed because they feel they must invalidate themselves to guarantee some care for their children. They define themselves as professionals, so they try to manage and bear the discomfort and the intense anxiety they feel.
For children themselves, the coping mechanisms were used to understand their perspective in the study of De Matos et al. (2014). Through coping mechanisms, children played giving medication to the babies and reproduce drug intervention with skills. One of the children in treatment said he was going to take the medication, because the doctor said so. Through his gestures, we can see that the child adopted the role of the doctor and played with the associates. This indicates Mead’s concept of play stage in developing the sense of self (Smith &Hamon, 2017).
Similarly, in Woodgate’s study (1998), through the process of interaction, adolescents not only interpret themselves, but also the emotions and feelings from the live interactional experience. One of the girls with diabetes said she felt frustrated when she talked to the caregivers she had, because they did not understand some of her thoughts. She knew the caregivers knew enough about her illness, but she still wanted them to know more about her feelings and thoughts. This study indicates that it is not only the perspective of self that emerges from the interaction with others, but also the feelings and emotions that individuals have.
Finally, the last theme of symbolic interactionism Blumer (1986) talks about society, which means as human beings, we are not only influenced by our own self-concept but also behave according to the ritual and the norm of the culture and society where individual lives in.
In a study of Sousa et al. (2013) found that in the work of continued care of families of children with chronic disease, the professional members from FHS (Family Health Strategy) team were influenced by the interaction with the macrostructure like the health-care system. One of the FHS team members said the limited resources they had restrained their ability to help the children. They asked help from the pediatrician but did not get a satisfied response. The barriers from the society affect the FHS team to establish the care plan.
Similarly, for the children who have the chronic illness, their perception and attitude are affected by the society. In the study of Woodgate (1998), about half the adolescents expressed their concern about future employment or career choice and what effect their chronic illness may have in limiting their opportunities. Woodgate (1998) showed that the adolescents’ pain is not only from the illness itself but also the effect from the society and how the majority in the society viewing them.
Generally, the symbolic interactionism is often chosen as the theoretical framework in the study of the family with children who have the chronic illness. From these studies, we learn the importance of the communications and how people behave according to the meaning they assigned.
Human ecological theory
Human ecological theory focuses on the relationship between the individual and the environment. Human ecologists believe that human beings directly or indirectly interact with their biological and social environment and are interdependent. Children with chronic disease have a higher rate of mental state and behavior abnormality problem (Choo, Kim, Turk, Kim, &Yang, 2016). They also affect their family relationships (Kazak & Nachman, 1991). An analysis of children with chronic disease and their environment using human ecological theory clearly shows that behavior problems of ill children associate with multiple factors and interactions between family members can be positive or negative.
The ill child is an individual who is influenced by his/her characteristics such as age, health, and sex (Smith &Hamon, 2017). Children with chronic disease are severely influenced by their health conditions (Kazak & Nachman, 1991). For example, children with cancer have higher levels of anxiety, because of Chemotherapy-related nausea and painful treatments. According to Allardt’s theory, individuals need to be valued by others (as cited in Smith &Hamon, 2017), however, because these children usually depend on other members of the family and they cannot contribute to the family, they usually show more negative emotions and behaviors.
Ill children are interdependent on the environment they live. Human ecologists believe that children’s behavior will vary based on the microsystem (Smith &Hamon, 2017).A study reported that ill children have fewer friends when they show more aggressive behaviors (Choo et al., 2016). Moreover, in families with chronic disease, while parents have a lower level of HRQOL (health-related quality of life) and satisfaction with the daily routine, their ill child more likely has behavioral problems. Ill children have less chance to joy in child welfare agencies that have more behavioral problems (Choo et al., 2016). Microsystem is the environment that can influence the individuals directly (Smith &Hamon, 2017). Friends in school, parents’ HRQOL level, and child welfare agencies, all of them are factors associate with behavior problems of chronic illness children.
Smith and Hamon believe that “human beings and groups are product of both genetics and environment” (2017, p. 185). People’s behavior and development are affected by nature and nurture interaction. As discussed above, both nature factor (chronic disease) and nurture factor (friends, parents, and child welfare agencies) contribute to the behavior problems of chronic illness children.
Parents. The child is in the center of the nested structure, and they primarily influence their family members but also are influenced by them (Kazak & Nachman, 1991).When these children are subject to suffer of the disease, their parents are also strongly affected. A study on juvenile rheumatic diseases (JRDs) shows that these parents show similar emotions to their children, such as guilt, anxiety, hopelessness, and isolation (Ryanet al., 2010). Moreover, compared to the families with healthy children, families with disabled or ill children have higher rates of marital conflicts and divorce (Kazak, 1989). Mothers have lower marital satisfaction when they believe that their children’s health condition have massive negative effects on their family (DiFazio, 2013). Children with chronic disease are influenced by their parents as well. For example, increasing marital conflicts and divorce can impact metabolic control function of children with diabetes (DiFazio, 2013).
The interaction between these children and their parents also can show a positive way. A study about children with Neurofibromatosis type 1 (FN1) points out that when sick children complain about their physical pain to their parents, the way that parents react to their children’s complaints can mediate the children’s distress (Martin et al., 2012). Allardt believes that humans need to relate to other people, including being loved and loving, and communicating within the context of their environment (as cited in Smith & Hamon, 2017). In families with FN1 children, the children ask for love from their parents by complaining about their physical pain, and their need to relate to other people is satisfied by their parents’ response.
Siblings. Not only parents, but also siblings are influenced in such situations. Children who have a sibling with spinal bifida have very complex emotions towards the sick child, including jealousy, shame, guilt, protection and care (Bellin & Rice, 2009). In addition, many siblings of cancer patients worry of becoming cancerous, but they do not want to tell their parents about that (Kazak & Nachman, 1991). Some healthy siblings react positively to their sick sibling, including increased understanding for their parents and the ability to care for themselves and the sick child (Kazak, 1989).
Human ecologists believe that “decision making is a key aspect of family functioning” (Smith &Hamon, 2017, p. 189). Family members who live in a well-knitted family can make more acceptable decision to support their family. In the families with a higher satisfaction function, where healthy siblings feel included and valued, show great care and positive attitude towards their siblings with spinal bifida (Bellin& Rice, 2009). When a family has a child with chronic disease, the healthy siblings have to evaluate alternatives. They will choose the best way to figure out the situation, help their parents to take care the sick sibling.
In mesosystem, two or more microsystems influence each other. The interaction between parents and healthy children can affect negative attitudes towards the sick child. For example, in families with chronically-ill children, healthy siblings have lower self-concept than the sick child, because mothers spoil the sick child (Kazak & Nachman, 1991). Moreover, healthy siblings show more conflict and negative emotions towards their sick siblings, especially siblings of closer age (Bellin& Rice, 2009). In other words, because healthy children get less parental attention, they are more likely taking their anger and frustration out on the sick sibling.
Exosystem is composed of those settings or institutions not experienced directly by the child, but which affect his or her development in less direct ways (Smith &Hamon, 2017). A research in the UK found that about 70% of adolescent who had a sibling with a disability were teased or bullied in their school (Bellin & Rice, 2009). When healthy siblings attribute their experiences to their sick siblings, they have more conflict and negative emotion to their sick siblings (Bellin & Rice, 2009). The sick child does not present to health siblings’ school, but they are influenced indirectly.
Generally, the study of children with chronic disease and their environment using human ecological theory focuses on the relationship between the ill children and their environment. Children with chronic disease interact directly or indirectly with their environment, especially microsystem and mesosystem, and the outcomes of the interactions can be positive or negative.
Family Stress Theory
Family stress theory is helpful when studying any issue that produces stress with the potential to lead to crisis for an individual or a family. It provides a way to the analysis of the process of experiencing and resolving stressful life events. Studies often found families who are integrated and easily able to adapt their family roles to meet the needs of the situation are most capable of dealing with stress (Smith & Hamon, 2017). In context of family stress theory I will examine families with a child with chronic illness related to Double ABC-X model of family stress (Smith & Hamon, 2017) which states that when a family is challenged by multiple stressors (Aa) to maintain balance they will respond by utilizing their existing resources or accessing new resource (Bb). A family’s perception (Cc) of the stressful situation and evaluation of past and current coping success influence their ability to respond and adjust or adapt. A post-crisis (Xx) occurs when resources are depleted or inadequate to respond to the stress (Smith & Hamon, 2017; Patterson, 1988).
Pile-up (Aa factor)
Double A includes not only the original stressor but also the pile-up of life events experienced by the family at the same time (McCubbin & Patterson, 1983). The initial stressor event (A) (Smith & Hamon, 2017) for families is the diagnosis of chronic illness of their child. Additionally there are variety of family stressors imposed including the extra time, money, and efforts involved in early intervention. There are multiple criteria that describe an event as a stressor (Lipman-Bluman, 1975 as cited in Smith & Hamon, 2017). Studies often found that after diagnosis, parents of a child with chronic illness experience a sense of helplessness about what to do for their child, and sense of loss (for the longed-for healthy child, or the actual loss of their child’s health). The family and its functioning are at least temporarily disrupted. This uncertainty of the situation may perpetuate the crisis state (Cherry, 1989). In another study, parents stress related to their child’s disease was positively correlated with child health care utilization and disease severity (Barakat et al., 2007). According to Boss (2002), something that is not predicted is called nonnormative event (as cited in Smith & Hamon, 2017), as a stressor chronic illness is nonnormative or unpredicted as no parent wonders that their child will have a disorder. Similarly, stressor events can be ambiguous or clear (Boss, 2002). A research conducted on parents with chronically ill children found that parents are left in an ambiguous situation with little certainty about how the child’s illness will progress and, in some cases, how long their child will live. In addition, parents may be unsure of how to relate to their child with a chronic health condition. For example, parents may be uncertain how to discipline a child with a serious health condition (Berge & Holm, 2007).
Family Resources (Bb factor)
Upon initial impact of the stress being able to access existing and new resources (Bb) impact a family’s resilience or vulnerability to crisis (Smith & Hamon, 2017). Resources include characteristics, traits, or abilities of individuals, families, or communities (McCubbin & Patterson, 1985 as cited in Smith & Hamon, 2017). For instance, after diagnosis parents of a child with chronic illness will be his or her primary caregiver they will take care of the ill child by using their personal resources. Personal resources include financial well-being, physical and emotional health, education, and personality characteristics of individual family members (Xu, 2007). McCubbin, Patterson, Bauman, and Harris (1981) found that the most significant internal family system resources to be member self-esteem, open communication, mutual support, problem-solving ability, physical and emotional health, and a sense of mastery over the events they experienced. Similarly support from additional family members including grandparents reflects a positive impact on these families. The role of grandmothers in these families is especially important because they tend to provide emotional support for family members and often serve as secondary caregivers (Findler, 2000; Green, 2001 as cited in Heath, 2018). For instance, Green (2001) showed that grandmothers are a common source of weekly assistance. When grandparents participate, the number of other sources of assistance is higher. Additionally, help from grandparents has a positive effect on parental ability to maintain a positive emotional outlook and to avoid physical exhaustion. Furthermore, Heller, Hsieh, and Rowitz (2000) found that maternal depression of mothers of children with intellectual disabilities was lower when they received emotional support from the grandparents of the children. At higher stress levels the social networks may stabilize the family through reducing their impact of hardships by serving major sources of information about services and organizations which a family might utilize, especially in adjusting to a long-lasting stressor requiring considerable adaptation (Cherry, 1989).
Family Perceptions (Cc factor)
The double C factor refers to the meanings the family attributes to the crisis (Xx), the pile of stressors and demands (Aa), and their resources (Bb) to deal with them. Family perceptions are not constant for all families. For instance, having a child with chronic illness is stressful for families, but not a negative experience for all families. They may consider it a natural coincidence and accept the child as who he is. There are some parental reactions connected to their child’s problems including shock, denial and disbelief, sadness, anger, and anxiety (Cherry, 1989). A need to search for meaning is another reaction of parents in these situations. Their child’s problem occurring randomly, as a quirk or fate, is very difficult for them to accept. They may feel that they are living in a meaningless world without norms or a framework of rewards and punishments for behavior. They seek a meaningful and understandable explanation for seemingly indifferent events (Cherry, 1989). Patterson and McCubbin (1983) pointed out that giving meaning to the situation clarifies the issues for the family, suggests potential solutions to the problem, renders the emotional strain associated with the crisis more manageable, and enables the family to re-establish its equilibrium. Likewise, many parents undergoing such stress likely prepare themselves for the worst but hope for the best, which is anticipatory mourning mixed with denial (Cherry, 1989).
Family Adaptation (Xx factor)
Crisis is a state or period of disorganization that may change the functioning of the family. In this stage families reach an adaptation through family coping efforts trying to maintain a balance in family functioning. Instead of experiencing a crisis and demand for change, the family over time adapts itself dynamically to the stressor. The disruptions of family homeostasis may be an opportunity for reorganization and desirable changes in family life, (Reiss, & Oliveri, 1980) or may result in dissolution (bonadaptation or maladaptation). In other words, once families perceived their crisis in a manageable way, they started developing positive strategies for coping with the crisis. For instance, mother of a chronic ill child can pursue a special education on nursing or special child care in order to help her child in a great way. She can also apply for any financial assistance through the local government. Likewise rest of the members of the family can inspire and help her to do these activities.
Using the theoretical framework, we connect the theoretical concept to our perspective which helps us understand what we found in the research studies.
The studies using the symbolic interactionism theory mainly focus on the communication between the family and caregivers, the children and the caregivers. Through the findings, the symbolic interactionism really helps us to know the limitations of the caregiving process to the chronic ill children. However, generally applying symbolic interactionism theory in the studies of chronic ill children focused too much on the meaning and communication, undertook the internal drive such as the caregiver’s’ personality may be a reason of why they behave in this way.
Family stress theory is straightforward to indicating the problems of the family. In the research, double ABC-X model allowed us to notice the complex stresses and the available resources the families have, figure out the difference between the families which had negative adaptation compared to the families had the positive results. However, in the studies of the children with chronic illness, applying stress theory ignores the stressor like the discrimination and oppression of some subgroups.
Human ecological theory gives us a broad picture, makes us know that the multiple factors will affect the chronic ill children and the whole family context. Although the Human ecological theory enables researchers to consider various factors in different systems, it cannot indicate the key factor. Because the effect is reciprocal, change in one system could lead to unexpected influence on other system, which makes the adjustment of the treatment to chronic ill children hard to apply.
Overall, by analyzing the three theories applied in the different researches of the family with the chronic ill children, we find out each theory have its own strengths and limitation, and the best choice of the theory to the research should depend on which aspect of the topic the research focus on.
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