Perspectives on living with coeliac disease in remission Daily life experiences, symptoms and well-being

Sammanfattning: Background and aims: Despite living with a gluten-free diet (GFD) Swedish women with coeliac disease (CD) report a lower level of well-being than women without the disease and men with the disease. The all-embracing aim of the thesis was to study experiences of living with coeliac disease in remission and to discover whether a patient education intervention can influence the perceived health and daily life of women with coeliac disease.Methods: Studies I-IV were based on the same sample, a total population of 106 women, > 20 years old, with confirmed CD, who had been treated with a GFD for a minimum of five years. From the total population of 106, 15 and 14 purposefully selected women were included in studies I and IV respectively, which had a phenomenological approach by which data was collected through recorded personal narrative interviews. The participants in studies II & III, comprising the total sample of 106 women, were randomized to one of two groups: either to the intervention group (n=54) that underwent a ten-session patient education (PE) program with problem based learning (PBL), or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis. Data was collected by self-administered questionnaires. Study V included 22 purposefully selected people (11 women and 11 men) with confirmed CD that had experienced any kind of residual discomfort despite treatment for at least five years with a GFD. Data was collected by recorded semistructured interviews.Well-being (II-III) was assessed at baseline and after 10 weeks in all patients and after six months in the intervention group using the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale. The interviews (I & IV), which were carried out before the start of the PE (I) and within two weeks of completion of the PE program and about three months after the first interview (IV), were analysed with descriptive phenomenology. The data from study V was analysed by content analysis.Results: In the results, the experience of living with CD in remission was described by participants as a constant quest for a normal life (I, V). Three constituents representing conditions necessary to achieve a normalised lifeworld were described (I) as: being secure, being in control, and being seen and included. The balance of thoughts in relation to these constituents proved to be crucial for the individual woman’s ability to experience a normal life, despite the disease. Participants described (V) conditions facilitating the opportunities to live a normal life, but also various barriers to reaching this goal.The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety.The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety.