Children of Parent's with Chronic Inflammatory Musculoskeletal Diseases: Experiences, Needs and Resources

Overview: Whilst each section of the thesis is required to stand alone, it is presented in the following order so that the thesis has a logical flow. Literature review: Presents an overview of the rheumatic diseases and their impact upon parenting and families. We note the provision of patient education for parents, but not for their children. The comprehensive but selective narrative review focuses upon how adults and children conceptualise and understand illness, and explores the concept of normalisation as a potential family management strategy. Service Evaluation: We sought to establish whether parents/grandparents would welcome the provision of appropriate patient education about rheumatic disease being made available to their children/grandchildren. Using a cross-sectional study design, a questionnaire was distributed to adult patients attending the local rheumatology service and members of four UK national rheumatology charities. Participants were strongly in favour of developmentally appropriate patient education for their children/grandchildren. Suggestions were made for content, format, timing and method of delivery. Main Report: We sought to understand how the diagnosis and impact of parental rheumatic disease has been understood, talked about, and managed within families who have young children. Again, we asked for views about providing patient education for children. We were particularly keen to give children a voice in determining whether, and how, any resources designed for them should develop. Utilising a qualitative design informed by an interpretivist framework, we employed semi-structured interviews and visual data collection methods. Eleven families with children aged between seven and 11were recruited from the local rheumatology service. Interviews and visual data were analysed using thematic analysis. The results are discussed within the concept of 'normalization'. Implications for clinical practice and further research are highlighted. Critical Appraisal: Contains a critique of both the research process and the methodology used.