Description and adequacy of parental coping behaviours in childhood leukaemia

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Abstract

This investigation explored how parents perceived the child's leukaemia and how well coped with it. Forty-one mothers and 30 fathers recruited from the largest Hellenic paediatric hospital were asked to answer closed and open-ended questions and to complete the Coping Health Inventory for Parents [CHIP]. Most of the participants perceived the child's disease as a serious and threatening situation. The strategies aimed at maintaining family strength and an optimistic outlook were ranked as being the most helpful. Using specific criteria, it became evident that, overall, the subjects coped well. Neither gender nor spousal differences were found in the variables examined. Implications for health-related research, theory and practitioners are addressed.

Introduction

As a result of medical and technological advances, the prognosis for many childhood cancers has improved considerably over the last 30 years (Eiser et al., 1995; Stiller, 1994). Today, approximately 60% of children with malignancy in many developed countries such as Greece, Britain and the US achieve cure or long-term survival (Granowetter, 1994; Matsaniotis, 1998; Stiller, 1994). In accordance with international protocols of medical practice (Eiser, 1993; Miller, 2000), current medical treatment of childhood cancer in Greece aims at controlling the severity of symptoms, decreasing complications, reducing the incidence of relapses and helping the child to have as normal a life as possible (Matsaniotis, 1998).

Because childhood cancer is now viewed as a chronic life-threatening illness (Thompson and Gustafson, 1996; Woodgate and Degner, 2003), parents are increasingly becoming the primary caregivers and thus are challenged to cope with multiple and complex problems and tasks (Eiser, 1994). Although coping of family members with chronic childhood illness has been given a high priority in the health care field, the knowledge of the degree of versatility of parental coping strategies is limited, and there is a need for data-gathering research designed specifically to further assess them (Grootenhius and Last, 1997; Murray, 1998).

In Greece, little focus has been placed on identifying the ability of parents to maintain and/or adopt functional behavioural patterns to meet both the present and the anticipated needs of their family resulting from the child's cancer. This is so because, traditionally, Hellenic health care education and training are based on a strong medical philosophy centring on the physiology of the body and the pathophysiology and treatment of the disease. As a result, much of the clinical work is still patient-focused and concentrated primarily on the illness itself. In addition, a shift has occurred during the last decade in Hellenic health care policy. Due to the remarkable expansion of the private health care sector and the deinstitutionalisation of much of health care, the state has reduced its responsibilities for health and social welfare, expecting families to increase their participation in the care of patients. Despite this shift, however, the provision of services at the individual level still remains the predominant mode of health care practice and family oriented care is seldom incorporated even in the most orthodox intervention designs. Furthermore, in paediatric oncology, supportive programmes aimed at improving parents’ coping or decreasing emotional distress are still rare and their effectiveness has not been evaluated.

The philosophy that guided the present study was based on the current emphasis on “coping” as opposed to traditional approaches that focus on “maladjustment” and “maladaptation” (Swallow and Jacoby 2001a; Trask et al., 2003). Its implementation was also dictated by the need for nurses and other health care professionals to look beyond the care of the chronically ill child to the needs of parents (Hodgkinson and Lester, 2002). Thus it is the objective of this investigation to describe Greek mothers’ and fathers’ appraisals and behaviours when coping with a child's leukaemia in the remission phase. This study also assesses how well these parents cope with the child's disease. Such knowledge will enable health caregivers to offer both individualised and holistic care (Eiser, 1993), and to reveal areas in which there is a deficiency in coping (McCubbin, 1987). In addition, because the literature is contradictory in terms of the degree to which specific personal, familial, and illness-related factors influence parental appraisal and coping (Eapen and Revesz, 2003; McGrath, 2001; Sterken, 1996), this study was designed to elicit information about the role that some of these variables play in parents’ experience with the child's cancer. Finally, it attempts to identify gender and/or intra-couple differences and/or similarities in the reported appraisals and coping behaviours. Professional awareness of spousal similarities and differences is essential to the provision of family-centred care (Eiser and Havermans, 1992; Goldbeck, 2001).

Section snippets

Theoretical premises of the study

Although it has been noted that coping is not a linear process but a series of “ups” and “downs” which are often exacerbated by unpredictable events (Swallow and Jacoby, 2001a), two major approaches have been suggested to explain familial coping with a child's cancer. The first approach, called the “stages” framework, has a developmental perspective and depicts four phases that parents go through as they adapt: disbelief, anger, demystification, and conditional acceptance (Austin, 1990).

Review of related research

Recent investigations have revealed that although fathers and mothers of children with cancer may have different emotional and psycho-social responses (Grootenhius and Last, 1997; Speechley and Noh, 1992), they frequently report similar increased levels of distress and depression, feelings of loss, role strain, loneliness and helplessness, difficulties in decision-making and uncertainties regarding their parenting roles and behaviour (Havernmans and Eiser, 1991; Eiser et al., 1995; Van

Subjects

The sample consisted of 42 consecutively selected families with 41 mothers and 30 fathers who had a child diagnosed with leukaemia at least three months prior to the implementation of the study. The total sample (N=71) was composed of 29 couples, the remainder of the sample being composed of one father and 12 mothers. The University of Athens reviewed this research protocol for the protection of human rights and approved the study. The members of the General Council of the paediatric hospital,

Parental appraisal

Almost all parents (n=69, 97.2%) reported that the child's leukaemia was a threatening situation. Only two fathers in the sample did not appraise the disease as “threat” to their child's and family's well-being. As far as perceived severity is concerned, fifty parents (70.4%) said that the child's medical condition was very serious whereas 14 (20%) of them believed that it was somewhat serious. Four fathers and one mother reported that they were not sure about the severity of their child's

Discussion and Implications

The parents’ fear for the child's life as indicated by their high levels of perceived seriousness and their appraisal of the disease as “threat” revealed that, similarly to the initial phase of diagnosis, the remission stage of childhood cancer may also engender stress. These findings underlie the necessity for the provision of a continuum of services to families experiencing childhood malignancy. Although this study showed that mothers and fathers did not differ in their perceptions of the

Limitations of the Study

First, due to the design of the CHIP, it was impossible to discern whether helpfulness levels of some of the coping patterns it describes were low because subjects found a strategy ineffective or because they had no opportunity to use it. Second, although linguistic equivalence was achieved and face validity was assessed, the Hellenic version of the tool was not tested for its reliability. Future studies thus should examine its psychometric properties since, although only tentatively, these

Conclusion

Because childhood cancer has social or psychological consequences that at times may be more serious and debilitating than the physical illness itself, an understanding of parental appraisal and coping is of great significance. This is so because (a) the parents form the executive unit of the family, thus determining the way in which it functions and its emotional and psychosocial environment, and (b) they play a crucial role in establishing how the family unit will handle the situation. If

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