Abstract
Families of children and adolescents with newly diagnosed chronic illnesses are touched in many ways by various emotions (Patterson, 1995). Parents experience a range of emotions such as guilt, anxiety, shame, anger or misery, all of which could influence child care practices. From the outset of a chronic illness, a child also faces potential stressors in the form of threats to bodily integrity, aversive treatment regimens with possibility of somatic side effects, and significant changes in physical appearance. A change also occurs in the child's interaction with peer group, disruptions in normal family affairs, social, and educational activities; all of which could be a significant threat to his survival. The human capacity for innovative survival has proven itself quite extraordinarily as everybody would secretly love to discover themselves as a heroic adventurer. The studies related to stress and burden of chronic diseases have gained impetus during the last two decades. Eventually, the past decade has seen a paradigm shift from the study of disease origins (pathogenesis) and psychopathology, towards Positive Psychology and study of human strengths to include the origin of health (Seligman & Csikszentmahalyi, 2000; Linley, 2004). The origin of health is influenced by many factors between the person and his or her environment (Antonovsky, 1994). It has been increasingly recognised that many children and parents successfully negotiate salient developmental tasks inspite of major stressors such as acute or chronic illness and possible underlying emotional distress (Garmezy, 1983; LutherZ Ungar, 2004). However, Boneno (2004) highlighted the inner resources that most people possess to overcome adversity and suggested that, resilience is the rule rather than the exception, and that there are multiple pathways to resilience. Based on an extensive literature review, Benzies and Mychasiuk (2009) identified and described nine specific protective factors, which include locus of control, emotional regulation, self-efficacy, effective coping skills, education, skills training, health, temperament, and gender. These factors improve competence and shield those at risk from the negative impact of adversity. However, recent literature on families of individuals diagnosed with other childhood chronic illnesses and disabilities have noted that these chronic conditions can also have positive implications for some families (Marcus, Kunce, & Schopler, 2005; Bayat, 2007). Such positive outcomes include a new or renewed sense of spiritual connectedness, emotional growth, a sense of purpose, and a larger community network (Scorgie, Wilgosh, & McDonald, 1996; Twoy, 2007). In addition to using social and community resources that enhance coping, chronically ill persons and their families engage in a number of coping activities that mitigate the impact of the illness (Kabasa, 1982). Studies with pediatric cancer patients and other childhood chronic illnesses found that high family cohesion, adaptability and cognitive coping strategies of family members were relevant for siblings as well as patients' emotional well-being and predicted fewer adjustment problem (Horwitz & Kazak, 1990; Houtzager, Oort, & Jossett, 2004). Parental distress and use of palliative coping strategies (eg: avoidance, wishful thinking & self-blame) were associated with emotional and behavioural problems in their children (Ratip & Modell, 1996; Sloper& White, 1996).The following case study is an example wherein facilitating Personal and Familial factors were evident in sustained adaptation of the child suffering with genetic disease such as Turner's syndrome. The purpose of this article is to describe psychological perspective in resilience of a child managing health condition that influences the illness outcomes. …
Published Version
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