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- Lindgren, Britt-Marie, 1961-
(författare)
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Self-harm - hovering between hope and despair : experiences and interactions in a health care context.
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background The definition of self-harm used in this project is repeated, impulsive behaviour causing tissue damage, yet not intended as a suicide attempt. Instead of wishing to die, the person who self-harms wishes to be relieved from anxiety. The thesis comprises four studies and the overall aim was to describe experiences of care among people who self-harm, professional caregivers, and close relatives (parents), and to explore interpretative repertoires that jointly construct the interaction between people who self-harm and their professional caregivers. Methods The participants were nine women who self-harmed (I), six nurses, three of each sex (II), five mothers and one stepfather (III), and six women who self-harmed in two psychiatric inpatient wards and their caregivers (IV). Data were collected through narrative interviews (I, II, III), participant observations (IV), and informal interviews (IV). The interviews lasted between 40 and 50 minutes (I), between 40 and 65 minutes (II), and between 30 and 85 minutes (III). The observations including informal interviews in study IV comprised 150 hours of descriptive observations and 40 hours of focused observations. The data were analysed using qualitative content analysis (I, II), phenomenological hermeneutics (III), and discursive psychology (IV). Results People who self-harmed experienced care as inferior, not satisfying their needs. The findings presented a paradox; on the one hand, the women realised that society considered self-harm an inappropriate way to alleviate mental suffering, and on the other hand, they experienced self-harm as the only way to survive and to foster hope in themselves (I). Caregivers felt powerless and burdened when unable to identify and satisfy the women’s needs. Feelings of fear, frustration, and abandonment created a significant burden for caregivers (II). Parents’ lived experience of the professional care and caregivers of their self-harming adult children could be described as a hostage drama. As in a hostage situation, parents felt held to emotional ransom by deficient care and sometimes hostile caregivers (III). The interpretative repertoires that jointly constructed the interaction between those who self-harmed and their professional caregivers, were for the caregivers a fostering and a supportive repertoire, and for the women who self-harmed a victim and an expert repertoire. The interactions between a fostering caregiver and a woman as expert or as victim, and between a supportive caregiver and a woman as victim, were complicated and promoted feelings of hopelessness among the participants. Interactions between a supportive caregiver and a woman as expert were more satisfying and raised hope among the participants (IV). Synthesis of findings Hope and hopelessness ran together as a thread of meaning throughout the studies. All participants experienced and expressed hope and hopelessness in various ways. The self-harming women hovered between hope and hopelessness, hoping for help and support, but led back to hopelessness by their experiences in care. The women used self-harm as a way to cope and to maintain hope in themselves. The parents initially had confidence in healthcare and hoped for help. However, their experiences of meeting deficient care often made them feel hopeless. Parents paid an emotional ransom when they accepted deficient care for their daughters. The caregivers felt frustrated, angry, and powerless, and their view of self-harm as an endless behaviour led to hopelessness. However, they struggled to see the women’s abilities, not only their difficulties, and described how they had to try to see self-harm in another way. Caregivers who were convinced that it was possible to stop self-harming and leave it behind were able to bring hope to themselves, to parents, and to the women who self-harmed. The present studies suggest that there is a difference between self-harm and suicide attempts or suicide. Other researchers echo these findings. Conclusions Paradoxically, self-harm usually seems to be a life sustaining act, a way of raising hope in oneself. The importance of caregivers who listen and try to understand people who self-harm, as well as their close family members, is evident. By asking open-ended questions and being non-judgemental, listening, and showing a genuine interest in the person’s lived experience; caregivers can inspire hope in people who self-harm.
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| 2. |
- Kautto, Ethel, 1966-
(författare)
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Is it the gluten-free diet that matters the most? : Food, gender and celiac disease
- 2014
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: The only treatment for celiac disease consists of excluding gluten. Gluten is a protein complex found in wheat, rye, and barley, which are cereals commonly used in bread, pasta, pizza, etc. The overall aims of this thesis were to study; what happens with food choices and nutrient intakes when individuals are prescribed a gluten-free diet and what consequences this has on the everyday lives of young women and young men dealing with this disease.Methods: A food frequency questionnaire (FFQ) was used to study nutrient intake and how food choices were affected after a change to a gluten-free diet. The FFQ was sent to 12-13 years-old adolescents who took part in a large Swedish celiac screening study. The following three groups were studied: previously diagnosed with celiac disease, screening-diagnosed and non-celiac controls. The first FFQ was sent out before the screening-diagnosed adolescents had been told they had celiac disease, and the second was sent 12-18 months after they had been prescribed the gluten-free treatment. Semi-structured interviews were performed five years later in order to study how everyday life was affected by celiac disease in seven young women and seven young men. The interviews were analyzed by content analysis.Results: The previously diagnosed celiac disease group reported a nutrient intake in line with the non-celiac control group. Most of the participants reported nutrient intakes above the estimated average requirements. A diagnosis of celiac disease altered the intake of some foods, and this was shown by comparing the results from the baseline FFQ before the diagnosis and the follow-up FFQ after. The young women and young men reported similar experiences of the gluten-free food, but the perceived consequences of living with celiac disease differed between genders.Conclusion: This thesis shows that after a diagnosis of celiac disease food changes are necessary in order to be compliant with the gluten-free diet. One common effect is that food options will be reduced. However, as long the food intake is gluten-free, varied, and in sufficient quantity there is no reason to worry more about the nutritional intake of adolescents diagnosed with celiac disease than there is for their non-celiac peers. The findings in this thesis also show that society’s gender order has a great impact on how young women and young men experience their everyday lives, with celiac disease, and with the gluten-free diet.
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