Academic journal article Australian Journal of Early Childhood

Life after the Shock! the Impact on Families of Caring for Young Children with Chronic Illness

Academic journal article Australian Journal of Early Childhood

Life after the Shock! the Impact on Families of Caring for Young Children with Chronic Illness

Article excerpt

Introduction

The birth of a child is usually a happily anticipated event in the lives of families, but for families of children with chronic illness, anticipation can turn to disbelief and joy to numbness as the full implications of children's health status becomes known.

According to Eiser (1990), the diagnosis of a chronic illness 'sets the stage for a revolution in the way of life experienced by patient and family' (p I). At the time of diagnosis few families realise how chronic illness will change their lives, with implications that are far-reaching and affect all aspects of family life. Eiser (1993) believes chat acceptance and care of children with chronic illness takes its own developmental course. For example, following diagnosis, families must deal with the shock and disbelief associated with their child's illness, whilst assimilating vast amounts of information about the illness and how it should be treated (Jessop & Stein, 1989). Families must learn to adjust work and social activities, remain hopeful, and define the limits of children's behaviour, taking account of their need to achieve independence, while balancing constraints imposed by the illness itself. Most parents will come to the realisation chat the ambitions they had for their child may never be realised, as illness can compromise achievement by limiting experiences and the acquisition of skills (Eiser, 1990).

The demands associated with care change during the course of treatment, as families integrate children's illness needs with the needs of other family members. For families to cope, they must address the strategies that are used to manage the anxieties of life. Moreover, the way families tope with their child's chronic illness impacts on the way that children themselves tope (Drotar, Crawford & Bush, 1984). Children's coping strategies and adaptations to treatment regimes are developed as they interact within their homes, and the more effectively their illnesses are managed within the family, the better they tope with treatments, socialise with healthy peers and function outside the family.

Family routines

For the families of a child with a chronic illness, disruption to ever),day routines are so commonplace that they may, in time, became the norm. Disruptions can include routine hospital appointments or admissions, and the requirement of special treatments and medications. Parental involvement in a child's care will require continuing role changes and pressures as children mature, in same cases even changing conventional parent-child relationships (Drotar et al., 1984). Ensuring health regimes are followed can be viewed as interference by children who resent constant monitoring as they strive towards independence. thereby adding further stress to family relationships (Sawyer & Spurrier, 1996).

The impact on families

The impact of chronic illness on family functioning is contingent on a range of factors; however, it can include limitations to finances, spouse and sibling relationships, extended family relationships and the ability to cope. Children's continued health problems can engender feelings of guilt and over-protectiveness characterised by severe restrictions on typical childhood activity, or can lead to extreme liberality to compensate.

In recent years there has been a significant shift from publicly-funded health services to the expectation that individual families will shoulder the majority of health expenses. Transport costs, equipment, specialised food, medication and loss of income, particularly when withdrawal from the workforce is necessary to meet care demands, can be substantial (Sawyer & Spurrier, 1996). The hidden costs associated with caring for a child with a chronic illness may include restricted mobility in terms of career, or, when the carer is employed, work time may be lost if frequent and ongoing treatments are required (Jessop & Stein, 1989). …

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