Abstract
Some cases of chronic pain have no demonstrable organic basis that can be identified or the physical impairment exceeds the pathology. This is a serious problem both for the sufferer and for health professionals attempting treatment. The adult literature regarding illness beliefs suggests that the individual conceptualisation of an illness problem impacts on adjustment, level of functional disability and adherence to treatment. In children, previous research has identified the influence of parents on the beliefs and behaviours that might exacerbate the pain experience. This study aimed to explore how parents conceptualise the long-term pain experienced by their children. A semi-structured interview, based around the five domains of illness representation, was carried out with eight parent couples and one single mother. This involved questioning parents about their beliefs regarding the identity of the pain, what they believed to be its cause, course and consequences and their beliefs regarding cure. Transcripts of the interviews were then analysed using the principles of interpretative phenomenological analysis (Smith, 1996). The analysis revealed that parents were less focused on how they conceptualised the pain and more concerned with the factors and processes that obstructed their drive to understand and consequently gain agency over their child’s symptoms. Three main themes were identified. The ‘Battle for Agency’ theme encompassed the experience of trying to establish a label for and an understanding of their child’s pain in the context of disagreements and conflicting information on the behalf of the health professionals plus the difficulty of accessing and maintaining treatment. The ‘Mind-Body Split’ theme reflected the ongoing persistence and consequences of conceptualising health problems exclusively as either physical or psychological. The final theme, ‘Coping’, gave insight into parental attempts to cope with the impact of the pain. Clinical implications arising from the three themes are discussed.