Academic journal article Contemporary Nurse : a Journal for the Australian Nursing Profession

Chronic Grief: Experiences of Working Parents of Children with Chronic Illness

Academic journal article Contemporary Nurse : a Journal for the Australian Nursing Profession

Chronic Grief: Experiences of Working Parents of Children with Chronic Illness

Article excerpt

INTRODUCTION

Over the last 20 years, advances in scientific knowledge and technology have resulted in an increased number of children being identified as having and living with a chronic illness (Blum 1991; Gibson 1995; Isaacs & Sewell 2003). The impact of caring for a child with a chronic illness has been widely investigated (Freedman et al. 1995; levers & Drotar 1996; Padeliadu 1998; Burke et al. 1999; Kurnat & Moore 1999; Melnyk et al. 2001; Hedov, Anneren & Wikblad 2002; Meleski 2002). Several studies have shown that parents who care for children with chronic illness experience greater emotional and psychological distress than parents of healthy children (Cheng & SoKumTang 1995; Silver et al. 1998; Pelchat et al. 1999; Isaacs & Sewell 2003). These negative effects have been attributed to the high levels of stress that parents experience while caring for a child with a chronic illness. The stressors experienced by these parents are usually multiple and ongoing, with the four most stressful experiences being the time of diagnosis; the ongoing health care needs of their child; developmental transitions; and illness exacerbations and hospitalisation experienced by the child (Melynk et al. 2001).

The diagnosis of a child's chronic illness can be a very stressful period for parents, evoking feelings of uncertainty and helplessness regarding the child's condition (Cheng & So-Kum Tang 1995; Silver et al. 1998; Pelchat et al. 1999). Indeed, Clements and colleagues (1990) confirmed that 70% of parents reported that diagnosis was one of the most difficult periods during their child's chronic illness (Clements, Copeland & Loftus 1990). Parental responses to the diagnoses varied and commonly included: shock; disbelief; denial; anger; feelings of guilt; decreased self-worth; and a lack of confidence (Bendel et al. 1994; Eakes 1995; Vickers 2005a, 2005b, 2006).

Many parents also experience grief and/or sorrow as they struggle with various aspects of their child's chronic illness (Clubb 1991 ; Atkinson 1994; Eakes 1995). Often, the uncertainty associated with chronic illnesses creates situations where there is no predictable end to the loss they experience and no opportunity for resolution or closure to resolve the grief (Titelman & Psyk 1991; Atkinson 1994).This unresolved grief associated with ongoing loss has been labelled as delayed grief, chronic grief and even chronic sorrow (Olshansky 1962; Buschman 1988; Clubb 1991; Phillips 1991; Lindgren et al. 1992; Eakes 1995; Vickers 2005a, 2005b, 2006).

Olshansky (1962) who first introduced the term 'chronic sorrow' observed this phenomenon in parents of children with severe mental retardation and viewed this as a natural response for parents confronted with grieving a loss that was never ending. He defined 'chronic sorrow' as pervasive sadness that was permanent, periodic, and potentially progressive in nature (Olshansky 1962). Since then, the concept of chronic sorrow has been applied to various situations. Chronic sorrow was shown to be periodic and progressive in parents of children with mental retardation (Winkler et al. 1981). Later, Mallow and Bechtal (1999) found that parents of children with developmental disabilities experienced chronic sorrow when their child was initially diagnosed. These findings concur with those of Damrosh and Perry (1989) involving parents of children with Down's syndrome.

Other studies have highlighted triggers for the re-emergence of feelings of chronic grief and/or sorrow (Winkler et al. 1981 ; Fraley 1986; Clubb 1991; Eakes 1995; Norwington 2000; Vickers 2005a, 2006). These triggers include the discovery of new medical problems; unending care giving responsibilities; the unpredictable nature of the child's illness; the potential for complications; and uncertainty about the child's future. Many parents also experience recurrent and/or chronic sorrow when their child struggles to attain age-appropriate milestones especially when they realize the difference and delays that exist between their child and other healthy children (Melnyk et al. …

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