Family care-giving and chronic illness: how parents cope with a child witha sickle cell disorder or thalassaemia

There has been increasing interest in the way parents cope with childhood c hronic illness and a shift away from merely describing the 'burdens' of car e. An emphasis on coping by introducing ideas such as co-ordinated, accessi ble and appropriate service delivery as well as empowerment raises importan t policy and practice issues for public health. This paper, by drawing on q ualitative material from a project evaluating service support to families c aring for a child with a haemoglobinopathy, examines how parents cope with their caring responsibilities. First, it discusses the general literature o n how carers respond to their role, before examining the specific literatur e dealing with the response of parents who look after a child with a haemog lobinopathy. Second, it presents the empirical accounts of parents who care for a child with a sickle cell disorder (SCD) or thalassaemia within the c ontext of this broader literature. The paper concludes that all parents fou nd caring stressful and demanding, but accept that they have to cope with t he situation for the sake of the child. Parents' contact with services is a n especially important contributory factor to their ability to cope and par ents described how services can both hinder and support their caring role. Appropriate professional support can help reduce stress and facilitate copi ng by offering information, financial help and emotional support. Unsympath etic responses from professionals, or their incompetence, however, meant th at many parents identified service provision as part of the problem, potent ially undermining their ability to come to terms with the condition.