Åsa Hörnsten

'The pump was a saviour for me.' Patients' experiences of insulin pump therapy.

The present study formed part of a larger study examining the potential long‐term effects of glycaemic control and treatment satisfaction in people with Type 1 diabetes mellitus who changed from multiple daily insulin injections to insulin pump therapy. Individuals (n = 46) who made the transition between May 1999 and February 2004 participated. The aim of the study was to describe experiences of the impact of insulin pump therapy in adults with Type 1 diabetes mellitus after > 5 years’ use of an insulin pump.

The Process of Care-seeking for Myocardial Infarction Among Patients With Diabetes

Background:People with diabetes have a higher risk for myocardial infarction (MI) than do people without diabetes. It is extremely important that patients with MI seek medical care as soon as possible after symptom onset because the shorter the time from symptom onset to treatment, the better the prognosis. Objective:The aim of this study was to explore how people with diabetes experience the onset of MI and how they decide to seek care. Methods:We interviewed 15 patients with diabetes, 7 men and 8 women, seeking care for MI. They were interviewed 1 to 5 days after their admission to hospital. Five of the participants had had a previous MI; 5 were being treated with insulin; 5, with a combination of insulin and oral antidiabetic agents; and 5, with oral agents only. Data were analyzed according to grounded theory. Results:The core category that emerged, “becoming ready to act,” incorporated the related categories of perceiving symptoms, becoming aware of illness, feeling endangered, and acting on illness experience. Our results suggest that responses in each of the categories affect the care-seeking process and could be barriers or facilitators in timely care-seeking. Many participants did not see themselves as susceptible to MI and MI was not expressed as a complication of diabetes. Conclusions:Patients with diabetes engaged in a complex care-seeking process, including several delaying barriers, when they experienced symptoms of an MI. Education for patients with diabetes should include discussions about their increased risk of MI, the range of individual variation in symptoms and onset of MI, and the best course of action when possible symptoms of MI occur.

Experiences of and Coping With Severe Aortic Stenosis Among Patients Waiting for Transcatheter Aortic Valve Implantation.

Background:Aortic stenosis (AS) is the most common valve disease in Western countries. Transcatheter aortic valve implantation (TAVI) has made it possible to treat patients with higher surgical risks. These patients are informed about their poor prognosis with only months or a few years to live without treatment. Because of their severe symptoms, limitations, and suffering, patients awaiting TAVI need special attention. Objective:The aim of this study is to describe patients’ experiences of coping with severe AS and of waiting for TAVI. Methods:Swedish participants (n = 24; 9 women, 15 men) with a mean (SD) age of 80 (7.4) years who had been offered TAVI all agreed to participate in a presurgical interview. The interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis. Results:The participants’ experiences of coping with AS and awaiting TAVI were described by the main theme “living on the edge, but trying to stay in control,” which comprised 3 categories: “trying to cope with physical symptoms and anxiety,” “trying to preserve self and self-esteem despite life-threatening illness,” and “trying to process the decision to undergo TAVI.” Conclusions:Patients with AS and awaiting TAVI must cope with increasing symptoms and limitations in their social lives but still wish to be seen as the people they always have been. These patients may need extra support from healthcare personnel to process their experiences, which could help them to attach personal meaning to clinical information about the condition and its treatment that they could include in their decision about whether to undergo TAVI. Listening to patients’ stories could help nurses and physicians to ensure that disease and treatment are meaningfully understood by the patient.

Validity and reliability testing of the Swedish version of Melbourne Decision Making Questionnaire

BACKGROUND The Melbourne Decision-Making Questionnaire (MDMQ) is an attempt to capture and measure coping strategies that people use. The instrument had not previously been translated into Swedish. The aim of this study was to evaluate validity and reliability of the Swedish version of the MDMQ. METHOD A Swedish translation was performed and back-translated. A group of five pilot readers evaluated content validity. The translated questionnaire was tested among 735 patients, healthcare workers, healthcare students and teachers. A parallel analysis (PA), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed. RESULT An initial EFA with a four-factor solution showed a low concordance with the original 22-item four-factor model with a very low Cronbachs alpha in one of the dimensions. However, a second EFA with a three-factor solution showed a good model fit for the Swedish translation of the Melbourne Decision-Making Questionnaire (MDMQ-S) with a satisfactory Cronbachs alpha. A CFA showed a goodness of fit after deleting six items. CONCLUSION After testing the MDMQ-S, we found support for validity and reliability of the instrument. We found the 16-item version of MDMQ-S to be satisfactory concerning the subscales vigilance, procrastination and buck-passing. However, we found no support that the hypervigilance dimension could be measured by the MDMQ-S.

You never know when your last day will come and your trip will be over – Existential expressions from a melanoma diagnosis

AIM The aim of this study was to further explore expressions of existential experiences by patients diagnosed with malignant melanoma (MM). METHOD Semi-structured interviews were performed consecutively after diagnosis among 30 patients with MM. The methodological approach was inspired by Gadamers hermeneutic philosophy. RESULTS The analysis of expressions of existential experiences after having been diagnosed with malignant melanoma revealed that it is an existential process that people go through, beginning with feelings of suddenly becoming groundless at the time of the diagnosis, including being empty and in a vacuum, being in chaos and uncertainty and being confronted with ones own death. Next theme searching for solid ground included striving to understand what lies ahead, striving to find a balance in life - fighting, hoping, going on living and striving to prioritize family. The last theme creating islands of solid ground when living with cancer included understanding what is meaningful in life, living in the moment - seizing the day and keeping watch on the body. CONCLUSION On being diagnosed with malignant melanoma, people go through a process where many questions emerge, including an existential turmoil, which health professionals should be aware of to provide these patients with sufficient support.

Coping styles in decision-making among men and women diagnosed with malignant melanoma

Early care seeking is important for prognosis of malignant melanoma. Coping styles in decision-making to seek care can relate to prognosis since avoidant strategies could delay care seeking. The aim of this study was to compare self-reported coping styles in decision-making between men and women diagnosed with malignant melanoma. We used the Swedish version of the Melbourne Decision-Making Questionnaire to assess coping styles. Men generally scored higher in buck-passing while women and those living without a partner scored higher in hypervigilance. This knowledge could be used in the development of preventive programmes with intention to reach those who delay care seeking.

'Dealing with ambiguity' : the role of obstetricians in gestational diabetes mellitus

Objective. Gestational diabetes mellitus is a pregnancy‐related complication and therefore obstetricians counsel and manage the maternal health care for these women. This study describes obstetricians’ experiences of management of pregnant women with gestational diabetes mellitus. Design. Interview study. Setting. Hospital‐based specialist maternal health care clinics in Sweden. Population. A consecutive purposive national sample of 17 obstetricians providing maternal health care to pregnant women diagnosed with gestational diabetes mellitus. Methods. Interviews were recorded and transcribed. The data were analyzed using qualitative content analysis. Result. The overall theme describing the experiences of the obstetricians was labeled ‘Dealing with ambiguity’. This ambiguity permeated all aspects of working as an obstetrician within the maternal health care; the role of the obstetrician, the context of organization, the multifaceted maternal and fetal interests to balance, and lack of consensus, recommendations and evidence‐based knowledge. Conclusions. The study revealed the ambiguous situation experienced and managed by obstetricians providing maternal health care to pregnant women diagnosed with gestational diabetes mellitus. This indicates a need for national guidelines and standardized maternal health care services regarding gestational diabetes mellitus to fulfill the intentions of the health care system. Such recommendations may be beneficial and supportive for the health care professionals as well as for the mother‐to‐be and her fetus.

A questioned authority meets well-informed pregnant women : a qualitative study examining how midwives perceive their role in dietary counselling

BackgroundDuring pregnancy and afterward, a healthy diet is beneficial for the expecting mother and her foetus. Midwives in antenatal care have an ideal position for promoting healthy diets. Dietary counselling is however complex and recommendations can be controversial. While pregnant women struggle with dietary recommendations, midwives struggle with a lack of authority. The aim of the study was therefore to describe how midwives perceive their role and their significance in dietary counselling of pregnant women.MethodsAn interview study was conducted that involved twenty-one (21) experienced midwives, who worked in the Swedish prenatal health care. A qualitative content analysis was conducted.ResultsPregnant women were perceived to be well informed, but they needed guidance to interpret information on the Internet. They were described as rigorous and eager information seekers who needed guidance to interpret information as they were worried and emotional. The midwives saw themselves as a questioned authority who lacked support. This meant being informative and directive though not always updated or listened to. Their impact was uncertain and they could also lack sufficient competence to counsel in delicate issues.ConclusionThe midwives’ directive role may obstruct the women’s needs to manage the dietary recommendations and risk evaluation in a women-centred dialogue. Midwives need to acknowledge pregnant women as both well informed and skilled if they are going to develop woman-centred antenatal care. Ongoing training and self-reflection will be needed to make this change.

Patients’ self-reported function, symptoms and health-related quality of life before and 6 months after transcatheter aortic valve implantation and surgical aortic valve replacement

Background: Aortic stenosis is the most common valve disease in western countries and has poor prognosis without treatment. Surgical aortic valve replacement (SAVR) is the gold standard, and transcatheter aortic valve implantation (TAVI) is a new method that is used in high-risk patients who are denied surgery. The purpose of treatment is not only to save life, but also to reduce symptoms and increase health-related quality of life (HRQoL). Objective: The aim of this study was to describe patients’ self-reported outcomes in terms of physical function, symptoms, dependence, HRQoL, and cognitive function after TAVI and SAVR. Methods: All patients treated with TAVI during 1 year (n = 24) and age-matched patients treated with SAVR (n = 24) were included. Data were collected on the day before and at 6 months after treatment using structural questionnaires. Results: Self-rated function was low before treatment and increased at follow-up. A quarter of all patients reported syncope at baseline, and none reported this at follow-up. Breathlessness was reported by all patients to be the most limiting cardiac symptom, but the TAVI patients reported more severe symptoms. At 6 months’ follow-up, symptoms were reduced, but breathlessness and fatigue were still common, especially in the TAVI group. HRQoL, which was very low in the TAVI group at baseline, increased in all dimensions except social function. Conclusion: We found no change in cognitive function or dependence at follow-up. There was no difference in the size of improvement between groups. The results could be helpful when informing future patients in order to give them realistic expectations.

Patients' Decision Making About Undergoing Transcatheter Aortic Valve Implantation for Severe Aortic Stenosis.

Background:Aortic stenosis is the most common valve disease in Western countries, and its prevalence is increasing because of the aging population. Some patients, denied surgery because of high risk, can be offered transcatheter aortic valve implantation (TAVI). These patients are old and have comorbidities, and it is not always easy for them to make the decision about accepting TAVI. Objective:The aim of this study was to describe the decision-making process about undergoing TAVI treatment among people with severe aortic stenosis who are denied surgery. Methods:The Swedish participants (n = 24) with a mean age of 80 years who had been offered TAVI all agreed to participate in a presurgical interview. The interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis. Results:Three patterns in the decision-making process about TAVI treatment—ambivalent, obedient, and reconciled—were identified. The ambivalent patient is unsure of the value of treatment and aware of the risks; the obedient patient is unsure of the value of one’s own decision and wants to leave the decision to others; the reconciled patient has reached a point where there is no choice anymore and is always sure that the decision to undergo TAVI is right. Conclusions:People with aortic stenosis who are offered TAVI need to discuss the risks and benefits in order to participate in decision making about the treatment. They have different patterns in decision making and would benefit from healthcare professionals being observant of them to support them in this process in a manner consistent with their values.