Although there is growing interest in the support needs of disabled parents, little is known about the experiences and needs of families when a parent has a chronic illness. This thesis represents the first investigation into the support needs of parents with inflammatory bowel disease (lBD) and their children. IBD is a chronic illness that can cause a range of debilitating symptoms, including some which are associated with considerable social stigma. The theoretical frameworks underpinning the research are the transactional model of stress and coping, the family-systems illness model, and the resource-based approach to intervention. The research began with a qualitative phase, in which two exploratory studies were carried out, one involving parents with IBD, the other their children aged 6-20 years. Findings from this research led to a quantitative phase, which included a postal survey of 178 parents with IBD and 74 of their children, aged 11-16 years. The research found that parents' greatest difficulties in relation to parenting were with household chores, providing for financial needs, and social activities. In addition, rates of anxiety and depression amongst parents were significantly higher than reported in a UK community sample. Through regression analysis it was possible to account for 65% of the variance in depression. Significant predictors of depression were perceived IBD-related health status, parenting difficulty, and an interaction between family support and parenting difficulty. Anxiety was not well explained by regression analysis. Parents reported that their greatest need was for psychological support, including stress-management and counselling. Despite the difficulties parents experienced, their children, at least in the adolescent years, appeared to be largely unaffected in terms of their social life with peers, domestic responsibilities, school attendance, and relationships with parents. However, they did experience significantly more emotional and behavioural difficulties than expected for their age range. Preliminary research suggests these difficulties are associated with the child's age, whether the child has an illness or disability, parenting difficulties, and the child's relationship with their parents. A substantial proportion of parents and young people reported a need for age-appropriate information for children on IBD and its treatment. It is concluded that families can best be supported by interventions targeted at the parent, though information for children on the condition and its treatment would also be valued.
| Identifer | oai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:425417 |
| Date | January 2005 |
| Creators | Mukherjee, Suzanne K. M. |
| Publisher | University of York |
| Source Sets | Ethos UK |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
| Source | http://etheses.whiterose.ac.uk/21052/ |
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