Women’s lived experiences of learning to live with osteoporosis: a longitudinal qualitative study

BACKGROUND: A vast amount of literature exists concerning pharmaceutical adherence in osteoporosis. However, the process of learning to live with osteoporosis over time remains largely unknown. The purpose of this study was to gain a deeper understanding of the continued process of how women learn to live with osteoporosis. Our objective was to explore what characterizes women’s experiences of living with osteoporosis during the first year after diagnosis, when patients are prescribed anti-osteoporotic treatment, without having experienced an osteoporotic fracture. METHODS: Forty-two narrative qualitative interviews were conducted with fifteen recently diagnosed Danish women. A longitudinal design was chosen since this allows an investigation of the perspective over time. The interviews were conducted in the period of March 2011 to August 2012. Data were analyzed using a phenomenological-hermeneutic interpretation of text. No medical records were available for the researchers. All information with the exception of T-score was self-reported. RESULTS: The participants’ experiences could be described in two key themes developed through the analysis: 1) “To become influenced by the medical treatment” which consisted of two sub-themes “taking the medication”, and “discontinuing the medication”. 2) “Daily life with osteoporosis”, which was characterized by three sub-themes: “interpretation of symptoms”, “interpretation of the scan results” and “lifestyle reflections”. The results highlighted that learning to live with osteoporosis is a multifaceted process that is highly influenced by the medical treatment. In some cases, this is a prolonged process that can take around one year. CONCLUSIONS: The results suggest a need for improved support for individual women during the complex process of learning to live with osteoporosis. The study adds new knowledge that can be useful for healthcare professionals taking a health-oriented stance when supporting women in self-management of their illness. Further investigations of lived experiences over time in the field of osteoporosis research are therefore needed. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12905-017-0377-z) contains supplementary material, which is available to authorized users.