Daily experiences of children and adolescents with chronic illness and their families Sofia Pais & Isabel Menezes Faculty of Psychology and Education Sciences, Porto University, Portugal
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Abstract Approximately 20% of all children have a chronic illness and 65% suffer an illness severe enough to interfere with daily activities (Shaw & McCabe, 2008). Attending to the multiple contexts where children/adolescents live, particularly home, school and hospital, chronic illness may seriously limit the child and adolescent’s everyday experiences. Recognizing that these children/adolescents and their families needs and rights are frequently at risk and admitting that there are physical, social and cultural barriers which must be broken in their interaction with various institutions, this paper focus on these families strategies and on the impact of associative communities as relevant contexts to improve their lives (Lister, 2007). In fact, these specific associations related to chronic diseases have an important role in exposing discrimination and generally affirming that equality “requires differential treatment based on differential needs to achieve the same relative capacity for participation and citizenship” (Stainton, 2005: 291). This paper considers the daily experiences of families with children and adolescents that have chronic illness using biographic narratives. As Telford and colleagues stress “rather than interpreting behaviour as denial and promoting acceptance as a desirable end point, we suggest actively listening to the stories people tell” (2006: 463), and including both the needs and resources of these families. Therefore, the aim of this paper is to understand the role of associative communities and other informal contexts in what concerns the promotion of adaptation to chronic illness in children/adolescents and their families. Specifically, we will explore the meaning of participation in chronic disease associations as well as the singularities of empowerment processes lived by these children/adolescents and their families.
Keywords: chronic illness, support associations, participation, empowerment Introduction Chronic diseases are defined by the Centers for Disease Control and Prevention (CDC, 2003) as “illnesses that are prolonged, do not resolve spontaneously, and are rarely cured completely” (in Stanton et al., 2007: 567). Boekaerts & Roder (1999: 311) consider that a chronic disease is something which “cannot be cured, but treatment may ameliorate some consequences of the disease and prevent overall deterioration”. All over the world, there are a large number of
people affected by diverse chronic illnesses and as the population ages, increasing numbers of people will live with at least one chronic condition (Stanton et al., 2007). Asthma, diabetes, renal disease and rheumatoid arthritis are some examples that frequently cause some degree of disability. In fact, chronic disease imposes major challenges in the life of children, adolescents and their families, whose needs and rights are frequently at risk. One the other hand, a chronic illness necessarily involves a process of adjustment to and learning to live with all its singularities emerged (Telford et al., 2006; Livneh, 2001). This process, in which we can include school, family, hospital contexts, is “complex and involves fluctuations and movements back and forth” (Telford et al., 2006: 458). Family context A chronic disease does not only affect the child, but his or her family as well. Researchers agree that caring for a chronically ill child poses heavy demands on the parents, both practically and emotionally (Boekaerts & Roder, 1998). There are lots of unpredicted situations and strategies in these parents’ experience. Parents not only have to cope with a major life event, that is, the initial shock of the diagnosis, but also with the difficulties and problems that accumulate thereafter (Boekaerts & Roder, 1998). In general, parents have to spend more time visiting physicians, physiotherapists and other specialists. However, the emotional demands on these parents use to be even more stressful than the practical demands. Parents have to come to terms with the idea that their child may not achieve as much as they had hope for, and they may feel guilty or angry about the disease (Boekaerts & Roder, 1998). For various reasons, parents are becoming increasingly involved in the education and treatment of their ill children. Financial constraints, as Nachshen (2004) says, have expanded “parents’ roles to include the jobs of ‘information seeker, problem solver, committee member, public educator, political activist and, most importantly, spokesperson of the needs of their children’ (Minnes, Nachshen & Woodford, 2003 in Nachshen, 2004:67) who may be unable to communicate his or her own needs to those in power”. That’s why family empowerment is more and more seen as a central goal of efforts to improve services for families whose children have disabilities or special needs and, consequently, particular rights (Paterson 2001). School context In general, “children and students with chronic illness experience more academic difficulty than their healthy peers” (Thies, 1999: 393). This experience is not specifically related to intellectual incapacity, but it is associated with multiple factors such as the disease process and treatment consequences and absenteeism and social and emotional consequences [e.g. “elementary schools aged peers, concerned that the disease is contagious, may shun interaction with the child,
while adolescent peers are likely to avoid interaction because of fears of associating with someone who is different” (Davis, 1989 in Sexson & Madan-Swain, 1995:362)]. In some cases, as for instance in Juvenile Idiopathic Arthritis – as Thies (1999) describes - the impact on learning about childhood health conditions may pass for i) the long-term use of steroids swollen, stiff joints and pain medications; ii) depressed mood, anxiety, difficulty with memory, impaired sight, cataracts, difficulty with fine motor tasks (e.g. writing, difficulty walking to class, sitting/standing) and impaired concentration. On the other hand, given that the number of children attending school with a chronic illness has risen in the past years, “it is expected that teachers will have received training in chronic illness issues and be well-informed of the implications for a child’s education” (Clay et al., 2004:229). As Sexson & Madan-Swain (1995: 363) explain “when learning problems are not detected early, the student is likely to experience academic frustration and perhaps, further hampering regular attendance”. Hospital context Recognizing the regularity with which chronic illness children visit the hospital, there are some studies that emphasize the importance of relational quality between these children and their parents and the health professionals (Vieira & Lima, 2002). In this sense, the role of health professionals in the life experience of children with chronic illness is not only relevant in what concerns their medical condition (e.g. medical evaluation, medication prescription) but has also an impact in emotional and social domains. So, their influence is not just instrumental and technical, but is associated to an affective and warm interaction (Telford et al., 2006). As Seagle et al. (2002: 581) refer “the value of feeling cared for by concerned professionals, as well as family, may enable a child to grow in ways that prove beneficial even into adulthood”. On the other hand, Shaw & McCabe (2008) reveal, in their study about hospital-to-school transition for children with chronic illness, the extreme importance of social support to the adjustment of these children and families. Support association context Following Bronfenbrenner’s ecological perspective (1979) that stresses the interconnectiosn between multiple contexts in the individual’s life experience, different environments play an important role in the lives of people with chronic illness and might even contribute to improve their health (Shapiro, 2002). Cultural factors, economic status and social change, as well as social and communitarian organization structure and social support are some of these contributors (Stanton et al., 2007). Therefore it is not surprising that some authors have argued for the development of close relationships between family, schools and health cares, as well as other significant life contexts for children with chronic illness (Shaw & McCabe; 2008). One of our goals is to study the participation
of these children and families in chronic illness support associations as a possible empowerment predictor. In spite of being important in what concern exposing discrimination, claiming for specific rights” (Stainton, 2005), support association communities might become also relevant contexts where people can get to know others who share the same difficulties and alternatives and, in this sense, improve their lives (Queiroz, 2002). Therefore associations might be extremely relevant both in improving the lives of people with chronic diseases as they foster their autonomy and quality of life, and as mediators between families, society and State (Paterson, 2001). In spite of the challenges that chronic illness presents to children and adolescents, many families are able to adapt to their situation and develop a sense of control over their lives which is related to notion of empowerment (Gibson, 1994). Empowerment and participation Empowerment has been, as Stainton (2005) reveals, a keyword in social work and other human services. “While definitions vary, the essence of empowerment is about enhancing, securing and/or legitimating the power of oneself, another, or a collective” (Stainton, 2005: 289). It concerns a process by which people, organizations, and communities gain mastery over issues of concern to them (Rappaport, 1987). According to Zimmerman (1995: 582) “efforts to gain control, access to resources, and a critical understanding of one’s sociopolitical context are fundamental aspects of empowering processes”. As a consequence, it is of relevance that we develop a vision of chronic illness with an emphasis on an empowerment and rights’ perspective (Nachshen, 2004). In fact, the focus might be, on one hand, in how choices are made (not what choice is made) and, on the other hand, on what can a person do, with his/her ability, with that choice (and not only the act of deciding what a person wants to do) (Stainton, 2005). In other words, the challenge for social polity is not to find better services, but to create a structure in which individuals can articulate their demands directly and that prevents the state itself to obstruct the person’s potential participation (Stainton, 2005). Therefore, the concept of empowerment might have an important role in the quality of life of families whose children have a chronic illness (Itzhavy & York; 2000). As Stainton (2005: 291) defends “equal treatment’ does equate with equal citizenship since different people require different types of treatment to achieve the same basic capacity for participation”. Thus, “being concerned with equal capacity requires differential treatment based on differential needs to achieve the same relative capacity for participation and citizenship” (Idem, ibidem). For that reason, if people are to be empowered to control their own lives then they need to be able to articulate their wants, needs and choices (Idem, ibidem). In fact, “participation allows for citizens to develop personal and social competencies essential for political actions, to become empowered by exerting control over their lives and the life of their communities (…), to get involved in the process of public deliberation
over citizenship definition and expansion” (Menezes, 2003: 432). Recognizing the value of empowerment in this study it will foster an analysis of life experience of there families based on their singularities, rights, autonomy and participation (Boekaerts & Roder; 1999; Rappaport, 1981).
Aims The present study focuses on the daily experiences of families with children and adolescents with chronic illness. Data collection involves interviews with mothers as well as some biographic narratives with families; discourse analysis will be used as a data analysis methodology in order to explore both the needs and resources of these families and specifically to understand the role of associations and other informal contexts in the adaptation and empowerment of these families. The meaning of participation in chronic disease associations as well as the singularities which exists in the process of empowerment lived by these children/adolescents and their families will be considered.
Discussion “Research on the issue of compliance with medication from the perspective of people living with illness revealed that decisions about treatment are made in the context of beliefs, responsibilities and preferences” (Telford et al, 2006: 461). Although this point view, we focus on an extended vision of the chronic illness life experience that goes beyond an individual’s perspective and recognize the relevance of various contexts which interfere in these people lives. Some other researchers
(e.g. Stanton et al., 2006) also consider as important factors to the
adjustment to chronic disease socioeconomic status, culture and ethnicity, gender-related processes, social resources and interpersonal support, personal attributes, cognitive appraisal processes, perceived threats to life goals, disease-specific expectancies, finding meaning and coping processes. As one of the interviewed mothers referred “There are always a tendency for the mother to be the one who goes with the child to the hospital. She is absent today from her job, she is absent tomorrow and the situation might be complicated.” (D). It seems to be clear that for the families who have children with chronic diseases, the difficulties, the strategies, as well as the responsibilities should be taking into account the numerous contexts that, directly or not, interfere in their lives. In general, in the interviews with mothers, we could collect a range of emotional and practical stresses and fragilities but we could also observe their capacity to learn and adapt to their life conditions. “Usually I don’t suffer before, just in time. It doesn’t mind” (A, D). At the same time, all expect their children will have the quality of life they deserve in the future. On the other hand, observing the experience of their child’s school environment, they stress the importance of the relationships between students in what concerns their children/adolescents health conditions.
Evidently, social acceptance and improved peer relationships are a likely benefit for these students in the school setting (Barlow & Ellard, 2004). On the other side, as almost every interviewed mother referred, it was important that the classmates knew about their child’s disease (A, D, ZP). “It might be a contribute to the general understanding and mobilization in order to help these ill children” (A, D, ZP). Besides, and regarding the relevance of the training of education professionals concerning chronic illnesses, one of the interviewed mothers brought to her daughter school teachers a guidebook about the chronic illness of her daughter in order to promote a better knowledge about this particular disease and consequently an adequate procedure in pedagogic activities (A). In what concerns the experience in the hospital context, our data we confirm that the value of feeling cared for is an essential aspect. It is unanimous that feeling comprehension and calmness is fundamental to cope with the disease condition. One of the interviewed mothers assumed that she and her child had a hard experience with a health institution and health professionals: “I felt this insensibility (…) they had always an arrogant posture, a superior attitude, they could never be able to fall down to the abysm me and my child were in that moment” (ZP). The other mothers reflected their positive experiences with health professionals in hospital services. A different aspect regards medication: all of the interviewed mothers referred the difficulty they lived with their children medication, particularly because their children do not cooperate easily in some specific treatments or medicines. In fact, “team work” is an emergent and frequent word in mothers discourses. All of them talked about the importance of having good relationships between hospital, family and school professionals in order to foster the child’s inclusion in their natural contexts. The role of associations was also discussed. One of the interviewed mothers who faced an unfair situation related to the access to a medication support, appealed for the association to claim for the rights of people with chronic illness. Another mother confirmed this idea: “I think that we need to be associated, because together we will have must more power to influence instances which can benefit us, in social terms and in economic terms” (B). In fact, chronic illness support associations have, for some of these families, a significant importance
in crucial aspects as
recognizing and claiming their rights, giving them resources to better cope with the disease and social, educational, health institutions and asking and clarifying their questions; making them feel empathy and comprehension. This sharing and comfort are ordinary feelings for all the interviewed mothers: “it is good to know that we are not the only ones”, “they know what I live” (A); “I think it is important help those who are beginning now or are begun badly their chronic ill life experience” (D). People also declared the relevance of getting extremely practical and useful information, which sometimes they do not understand clearly in doctor’s hospital offices (D). The mothers underlined the importance of looking to families that don’t have the economic and cultural conditions to improve their children situation: “I had power, because I’m a graduate, I
have another attitude facing to a problem like this one, I have contacts with journalists, so I had the power, in that moment, to solve the problem, or at least to intervene (to claim my rights). And when a similar problem affects families that haven’t this power? The problem is not solved” (ZP). Taking into account the specificity of the families with children with chronic illness, they obviously do not deserve to be the ones who assume the sole responsibility for their life condition, generating a “blaming the victim” phenomena that views children and families has having needs without recognizing their rights.
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