Description and adequacy of parental coping behaviours in childhood leukaemia
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 () 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 (, 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
References (71)
- et al.
Parental psychopathology and children's adjustment to leukemia
Journal of American Academy of Child and Adolescence Psychiatry
(1993) - et al.
The care of my child with cancerparents’ perceptions of caregiving demands
Journal of Pediatric Oncology Nursing
(2002) Gender differences in adapting to a child's chronic illnessa causal model
Journal of Pediatric Nursing
(2002)- et al.
Parent coping and child distress behaviors during invasive procedures for childhood cancer
Journal of Pediatric and Oncology Nursing
(1999) - et al.
Emotions, coping and the need for support in families of children with cancera psychosocial model
Patient Education and Counseling
(1998) - et al.
Information provided to Hellenic parents about their child's leukaemia
European Journal of Oncology Nursing
(2003) - et al.
The importance of family functioning to caregiver adaptation in mothers of child cancer patientstesting a social ecological model
Journal of Pediatric Oncology Nursing
(1998) Uncertainty and coping in fathers of children with cancer
Journal of Pediatric Oncology Nursing
(1996)- et al.
Parent and adolescent adjustment to pediatric cancerassociations with coping, social support, and family function
Journal of Pediatric Oncology Nursing
(2003) - et al.
Experiences of parents of childhood cancer survivorsa qualitative analysis
Patient Education and Counselling
(1998)
A substantive theory of Keeping the Spirit Alivethe Spirit within in children with cancer and their families
Journal of Pediatric Oncology Nursing
Dynamic coping behaviors and process of parental response to the child's cancer
Applied Nursing Research
Family care-giving and chronic illnesshow parents cope with a child with a sickle cell disorder or thalasaemia
Health and Social Care in the Community
Assessment of coping mechanisms used by parents and children with chronic illness
American Journal of Maternal and Child Nursing
Family coping with childhood cancer
Hospice
Family influences on hopelessness among children early in the cancer experience
Journal of Pediatric Psychology
The Practice of Nursing ResearchConduct, Critique and Utilization
Family and illness predictors of outcome in pediatric brain tumour
Journal of Pediatric Psychology
Fathers of children with cancera descriptive study of their stressors and coping strategies
Journal of Pediatric Oncology Nursing
Childhood Cancer and the FamilyMeeting the Challenge of Stress and Support
Gender roles and/or styles in crisisan integrative analysis of the experiences of fathers of children with cancer
Qualitative Health Research
Impact of childhood cancer on the mental health of parents
Medical and Pediatric Oncology
Psychosocial correlates of paediatric cancer in the United Arabic Emirates
Supportive Care in Cancer
Growing Up with a Chronic DiseaseThe Impact on Children and Their Families
Making sense of chronic diseasethe 11th Tizard, Jack memorial lecture
Journal of Child Psychology and Psychiatry and Allied Disciples
Mothers’ and fathers’ coping with chronic childhood disease
Psychological Health
Parents’ attributions about childhood cancerimplications for relationships with medical staff
Child Care Health and Development
Family crisis following the diagnosis of a handicapped child
Family Relations
The process of empowerment in mothers of chronically ill children
Journal of Advanced Nursing
Parental coping with the diagnosis of childhood cancerGender effects, dissimilarity within couples, and quality of life
Psycho-Oncology
Pediatric oncologya medical overview
Adjustment and coping by parents of children with cancera review of the literature
Supportive Care in Cancer
Korean mothers’ psychosocial adjustment to their children's cancer
Journal of Advanced Nursing
Coping and communication among parents and children with human immunodeficiency virus and cancer
Journal of Developmental and Behavioral Pediatrics
Mothers’ perceptions of parenting a child with spina bifida
Child Care Health and Development
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