Exploring the lived experiences of mothers with Ankylosing Spondylitis

Ankylosing Spondylitis (AS) is a chronic, inflammatory condition. Symptoms include joint pain, stiffness and fatigue, with onset often occurring during young adulthood. The onset and complexity of the condition can potentially disrupt plans to start a family and make caring for young children difficult. There is currently limited research that focuses on the impact of AS on women with young children. The aim of this study was to explore the experiences of mothers with AS, focusing on the physical, psychological and social effects of the condition. Ten participants were recruited via an advert on the National Ankylosing Spondylitis Society (NASS) website. They were aged between thirty one and forty two, had been diagnosed with AS for between two and twenty five years, and had at least one child under the age of eleven. In-depth, semi-structured interviews were conducted; nine participants were interviewed by telephone, and one via Skype. Interviews ranged in length from twenty two minutes to eighty three minutes. Data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis (IPA). Three inter-related themes were found; uncertainty of the future, guilt associated with AS, and maintaining control. The findings demonstrated the significant impact AS can have on all spheres of life for the participants and their families. Due to the physical limitations and the unpredictability of the condition individuals were unable to maintain previous levels of activity. This made it difficult to make plans and prevented them from fulfilling their perceived parental role which resulted in feelings of frustration and guilt. For many participants there was a sense of an ongoing battle with the condition due to their inability to continue with tasks that were previously taken for granted. However, participants described their journeys of adjustment to establish and maintain control and bring a sense of normality back into their lives. This was achieved by modifying daily tasks such as carrying and changing babies, and increasing activities that they could do with their children that did not exacerbate their pain. Additionally, some participants felt that having AS had influenced their parenting styles and had made them mentally stronger and more compassionate. This study highlights the issues faced by women with AS who have young children, whilst acknowledging the positive aspects of parenting whilst living with the condition. Signposting parents with AS to sources of support and providing information on performing tasks