| 1. |
- Lööf, Helena
(författare)
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Pain, fatigue and fear-avoidance beliefs in relation to physical activity and body awareness in persons diagnosed with rheumatoid arthritis
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Pain and fatigue are highly common and a major concern for persons diagnosed with rheumatoid arthritis (RA). Having physical limitations, which have a significant effect on daily life, is also described as a major problem for persons with RA. Research findings show that a minority of persons with RA perform maintained health-enhancing physical activity (HEPA), and that psychosocial factors seem to be the most salient and consistent factors to explain variations in HEPA. Furthermore, fear of physical activity and exercise has been described as major barriers for persons with chronic pain. The ability to notice bodily inner sensations and stimuli (body awareness, BA) is described in the literature as having either a positive or a negative impact on a person’s health and well-being. However, the concept of BA is complex and therefore greater insight into this phenomenon is needed.Aim: The overall aim of this thesis was to investigate pain, fatigue and fear-avoidance beliefs in relation to physical activity and their correlates in persons with RA. A further overall aim was to develop a psychometric measurement of BA. A final overall aim was to deepen our understanding of BA in persons with RA.Methods: Study I was a psychometric evaluation of a Swedish version of the Body Awareness Questionnaire (BAQ) in a student population and in adults with RA. Studies II - III were a cross-sectional survey studies in adults with RA. Study IV was a phenomenological study using the empirical phenomenological psychological (EPP) method in adults with RA.Results: In study I, the value of Cronbach's alpha coefficients for the total score in the Swedish version of the BAQ was satisfactory. According to confirmatory factor analysis (CFA), neither a one-factor model nor a four-factor model tested in this study fulfilled the pre-specified criteria. In study II, pain was significantly associated with health-related quality of life (HRQoL) and disease activity. Fatigue was significantly associated with disease activity, BA and positive affect. The adjusted R2 was 28.6% for fatigue and 50.0% for pain. Study III showed that, for socio-demographic factors, being male and having a below average income were associated with an increased risk of high fear-avoidance beliefs about physical activity (mFABQ high). Moreover, the two disease-specific factors, which are most indicative of mFABQ high, were high level of pain and poor health. Concerning psychosocial factors, low HRQoL and low exercise self- efficacy were significantly associated with mFABQ high. The model fit was 0.27 (Nagelkerkés R2). In study IV, some general characteristics were found, which had to do with the disease giving rise to a higher degree of negatively toned BA. BA was a reactive process of searching or controlling for disease-related symptoms, or a reactive process that was triggered by emotions. In addition, BA was an active process in the sense of taking an inventory of abilities. All the participants had the ability to shift focus from BA to the outside world.Conclusions: This thesis showed that pain, fatigue and fear-avoidance beliefs about physical activity in persons with RA have several potential correlates, including socio-demographic, disease-specific and psychosocial factors for the variables investigated. The Swedish version of the BAQ is simple to administer and should be used as a tool to measure self-reported attentiveness to normal body processes. Cronbach’s alpha coefficient for the total score was satisfactory; nevertheless, since neither of the models fulfilled the pre-specified criteria further testing of the Swedish version of the BAQ is required. BA was found to be both positively and negatively toned in persons with RA, though RA resulted in a higher degree of negatively toned BA. Thus, the ability to shift attention, from BA to activities in the outside world, could sometimes be beneficial for the person’s general health and well-being. Having the opportunity to participate in meaningful and purposeful daily real-world activities keeps the mind busy (and distracted) and can decrease the negative BA.
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| 2. |
- Mourad, Ghassan, 1974-
(författare)
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Improving care for patients with non-cardiac chest pain : Description of psychological distress and costs, and evaluation of an Internet-delivered intervention
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: More than half of all patients seeking care for chest pain do not have a cardiac cause for this pain. Despite recurrent episodes of chest pain, many patients are discharged without a clear explanation of the cause for their pain. A lack of explanation may result in a misinterpretation of the pain as being cardiac-related, causing worry and uncertainty, which in turn leads to substantial use of healthcare resources. Psychological distress has been associated with non-cardiac chest pain (NCCP), but there is limited research regarding the relationship between different psychological factors and their association with healthcare utilization. There is a need for interventions to support patients to manage their chest pain, decrease psychological distress, and reduce healthcare utilization and costs.Aim: The overall aim of this thesis was to improve care for patients with non-cardiac chest pain by describing related psychological distress, healthcare utilization and societal costs, and by evaluating an Internet-delivered cognitive behavioural intervention.Designs and methods: This thesis presents results from four quantitative studies. Studies I and II had a longitudinal descriptive and comparative design. The studies used the same initial cohort. Patients were consecutively approached within 2 weeks from the day of discharge from a general hospital in southeast Sweden. In study I, 267 patients participated (131 with NCCP, 66 with acute myocardial infarction (AMI), and 70 with angina pectoris (AP)). Out of these, 199 patients (99 with NCCP, 51 with AMI, 49 with AP) participated in study II. Participants were predominantly male (about 60 %) with a mean age of 67 years. Data was collected on depressive symptoms (Study I), healthcare utilization (Study I, II), and societal costs (Study II). Study III had a cross-sectional explorative and descriptive design. Data was collected consecutively on depressive symptoms, cardiac anxiety and fear of body sensations in 552 patients discharged with diagnoses of NCCP (51 % women, mean age 64 years) from four hospitals in southeast Sweden. Patients were approached within one month from the day of discharge. Study IV was a pilot randomized controlled study including nine men and six women with a median age of 66 years, who were randomly assigned to an intervention (n=7) or control group (n=8). The intervention consisted of a four-session guided Internet-delivered cognitive behavioural therapy (CBT) program containing psychoeducation, exposure to physical activity, and relaxation. The control group received usual care. Data was collected on chest pain frequency, cardiac anxiety, fear of body sensations, and depressive symptoms.Results: Depressive symptoms were prevalent in 20 % (Study IV) and 25 % (Study I, III) of the patients, and more than half of the patients still experienced depressive symptoms one year later (Study I). There were no significant differences in prevalence and severity of depressive symptoms between patients diagnosed with NCCP, AMI or AP. Living alone and younger age were independently related to more depressive symptoms (Study I). Cardiac anxiety was reported by 42 % of the patients in study III and 67 % of the patients in study IV. Fear of body sensations was reported by 62 % of the patients in study III and 93 % of the patients in study IV. On average, patients with NCCP had 54 contacts with primary care or the outpatient clinic per patient during the two-year study period. This was comparable to the number of contacts among patients with AMI (50 contacts) and AP (65). Patients with NCCP had on average 2.6 hospital admissions during the two years, compared to 3.6 for patients with AMI and 3.9 for patients with AP (Study II). Four out of ten patients reported seeking healthcare at least twice during the last year due to chest pain (Study III). On average, 14 % of patients with NCCP were on sick-leave annually, compared to 18 % for patient with AMI and 25 % for patient with AP. About 11-12 % in each group received a disability pension. The mean annual societal costs for patients with NCCP, AMI and AP were €10,068, €15,989 and €14,737 (Study II). Depressive symptoms (Study I, III), cardiac anxiety (Study III) and fear of body sensations (Study III) were related to healthcare utilization. Cardiac anxiety was the only variable independently associated with healthcare utilization (Study III). In the intervention study (Study IV), almost all patients in both the intervention and control groups improved with regard to chest pain frequency, cardiac anxiety, fear of body sensations, and depressive symptoms. There was no significant difference between the groups. The intervention was perceived as feasible and easy to manage, with comprehensible language, adequate and varied content, and manageable homework assignments.Conclusions: Patients with NCCP experienced recurrent and persistent chest pain and psychological distress in terms of depressive symptoms, cardiac anxiety and fear of body sensations. The prevalence and severity of depressive symptoms in patients with NCCP did not differ from patients with AMI and patients with AP. NCCP was significantly associated with healthcare utilization and patients had similar amount of primary care and outpatient clinic contacts as patients with AMI. The estimated cumulative annual national societal cost for patients with NCCP was more than double that of patients with AMI and patients with AP, due to a larger number of patients with NCCP. Depressive symptoms, cardiac anxiety and fear of body sensations were related to increased healthcare utilization, but cardiac anxiety was the only variable independently associated with healthcare utilization. These findings imply that screening and treatment of psychological distress should be considered for implementation in the care of patients with NCCP. By reducing cardiac anxiety, patients may be better prepared to handle chest pain. A short guided Internet-delivered CBT program seems to be feasible. In the pilot study, patients improved with regard to chest pain frequency, cardiac anxiety, fear of body sensations, and depressive symptoms, but this did not differ from the patients in the control group who received usual care. Larger studies with longer follow-up are needed to evaluate both the short and long- term effects of this intervention.
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| 3. |
- Nygren Zotterman, Anna, 1976-
(författare)
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Encounters in primary healthcare from the perspectives of people with long-term illness, their close relatives and district nurses
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- People with a long-term illness and their close relatives regard encounters as the foundation of their relationshipwith the district nurses within the primary healthcare setting. The overall aim of this doctoral thesis was todescribe and elucidate the experiences of encounters for people with long-term illness, their close relatives anddistrict nurses within a primary healthcare setting. From the overall aim, specific aims were formulated asfollows: to describe district nurses’ views on quality of healthcare encounters in primary healthcare (I), toelucidate meanings of encounters for patients with long-term illness within the primary healthcare setting (II), toelucidate meanings of encounters for close relatives of people with a long-term illness within a primaryhealthcare setting (III) and to describe the experiences of dignity encounters from the perspective of people withlong-term illness and their close relatives within a primary healthcare setting (IV). Data were collected fromfocus group interviews (I), narrative interviews (II, III), and semi-structured interviews (IV). The interviewswere analysed using thematic content analysis (I, IV) and phenomenological hermeneutics (II, III). The findingsshow that encounters are given great importance among people who have a long-term illness, their closerelatives, and district nurses in the setting of primary healthcare. The manner in which the encounter wasexperienced in the relationship with healthcare personnel was, at many times, crucial for the whole careexperience to be viewed as beneficial or not. The findings show that district nurses described that the encountersformed the basis of their work as an important aspect and that many times they were difficult because of stressand lack of time. The first meeting with the patient was important since it was unique and unrepeatable. Districtnurses considered themselves as being the patients ‘advocate’ who helped them and protected their interests.They indicated the importance of confirming the patient as a person deserving of respect, and if a meeting turnedout poorly, it was their duty to give the patient an apology (I). The findings also show that patients with a longtermillness experienced that good encounters had health-promoting effects on their health and recovery. Patientsfelt well when they were welcomed as a person with respect, interest, and attention by the healthcare personnel.They wanted to participate in their own care by receiving regular information and follow-up dialogues abouttheir status with the healthcare personnel. Continuity with the healthcare personnel laid the foundation for apersonal and a trustful relationship (II). Close relatives of people with a long-term illness wanted to beencountered as part of the ill person’s family as they accompanied him or her to the healthcare centre. To beconfirmed as a family was important, as it gave meaning to their lives and strengthened their well-being. A goodencounter was characterised by aspects of being involved in the care of the ill person and being respected as avaluable person (III). The findings show that people with a long-term illness and their close relatives experienceddignity in the encounter when they had access to care. They experienced that it was important to be encounteredwith dignity, as it meant receiving help with their needs from the healthcare personnel. To be confirmed by beingseen and listened to was important. When the couples experienced dignity in the encounter, they felt satisfiedwith the care they received. To be encountered with dignity made they feel valuable; this facilitated their healthand well-being, and it contributed to a good impression of the healthcare personnel within primary healthcare(IV). In conclusion, the findings of this thesis show that healthcare encounters are more than just meetings; theyalso mean being confirmed as a human being by being treated with respect, engagement and dignity. Healthcarepersonnel should promote encounters for people with long-term illness and their close relatives in order tosupport their feelings of being regarded as persons and to feel that they are welcomed to primary healthcare withtheir needs, which can empower their health and well-being.
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| 4. |
- Bergsten, Ulrika, 1966-
(författare)
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Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis was to explore and describe patients’ and healthcare providers’ experiences of the causes, management and interaction in the care of rheumatoid arthritis (RA). Method: The thesis is based on four studies. Studies I and II contain data from an epidemiologic project involving patients who were recently diagnosed with RA. The patients answered an open-ended question about their conception of the cause of their RA (Study I). Qualitative data from 38 patients were analysed using the phenomenographic approach in order to identify variation in conceptions. The results of Study I formed the basis for categorizing the conceptions of 785 patients in the search for patterns of background factors (Study II). Study III aimed to explore how patients experienced their management of RA in everyday life. Data were collected by interviews with 16 patients and analysed according to Grounded Theory (GT). In study IV, the aim was to explore healthcare providers’ experiences of their interaction with patients’ management of RA. Data were collected by interviews with 18 providers representing different professions and analysed using GT. Findings: Patients’ conceptions of the cause of their RA revealed new aspects from the patient perspective that can complement pathogenetic models. Two descriptive categories emerged: consequences beyond personal control and overloaded circumstances, which included six categories of conceptions (Study I). The most common conceptions of the cause of RA were unexpected effects of events followed by work and family-related stress (Study II). Background factors that influenced the conceptions of the cause were age, sex and educational level. Patient management of RA involved using personal resources together with grasping for support from others in their striving for a good life. When linking these aspects together, four ways of management emerged: mastering, struggling, relying and being resigned (Study III). Healthcare providers’ experiences of their interaction with patients’ management shed light upon the important issue of delivering knowledge and advice. The providers’ attitudes constituted one cornerstone and patients’ responses the other. The providers reported that the interaction led to different outcomes: completed delivery, adjusted delivery and failed delivery. Conclusions: The findings contribute new knowledge from both patients’ and healthcare providers’ perspectives, which could be used to develop a more person-centred approach in rheumatology care. Person-centred care involves taking patients’ beliefs and values into account in addition to creating a trusting relationship between patient and provider. A successful person-centred approach requires an organisation that supports the person-centred framework.
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| 5. |
- Ekdahl, Ann
(författare)
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Women’s experiences of living with chronic obstructive pulmonary disease stage III or IV and the experiences of their close relatives
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This doctoral thesis is in nursing and the overall aim was to explore, describe, and generate knowledge about women’s experiences of living with chronic obstructive pulmonary disease (COPD) stages III or IV, and about the experiences of their close relatives. Living with a serious long-term illness such as COPD profoundly affects a person’s everyday life and thereby their health and well-being. Data have been collected through qualitative individual interviews (I, IV) and narrative interviews (II, III). The interviews have been analyzed via qualitative content analysis (I, IV) and phenomenological hermeneutical interpretation (II, III). The findings show that women with COPD stage III or IV and their close relatives experienced both suffering and moments of health during their everyday lives (I–IV), despite the unpredictability of their severe illness and their ever-present breathlessness (I). Women were the experts of their own illness, managing their everyday lives to enable moments of feeling well (II). In addition, being seen as diagnosis rather than as a person made the women feel ignored by healthcare personnel which influenced their health and well-being in negative way (III). Close relatives experienced difficulties in fully understanding the women’s struggle of living with COPD. In efforts to comprehend their ill health and stress, they must contend with a lack of tailored information and uncertainty while providing practical and emotional support (IV). The findings in this doctoral thesis show that women with COPD stages III or IV were living with an unpredictable ever-present breathlessness that causes suffering in their everyday lives. Despite this woman experienced moments of feeling well. Meanings of healthcare encounters for women with COPD stage III or IV showed that women wished to be seen as a person and not as a diagnosis. Feeling disrespected and unjust leaves women unsupported and could mean serious health risks. Close relatives asked for tailormade information and knowledge to further understand women’s ill health.
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| 6. |
- Ekdahl, Ann
(författare)
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Living with Chronic Obstructive Pulmonary Disease Stage III or IV from the Perspective of the Affected Women and Their Close Relatives : A Qualitative Study
- 2021
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Living with chronic obstructive pulmonary disease stage III or IV has a major impact on a person's everyday life. The aim of this licentiate thesis was to describe the experiences of women living with chronic obstructive pulmonary disease stage III or IV, as well as the experiences as a close relative to women with chronic obstructive pulmonary disease stage III or IV. In both studies, data were collected through individual, semi-structured interviews. The interview texts were then subjected to qualitative content analysis. A purposive sample of 15 women with either stage III or IV chronic obstructive pulmonary disease stage and a total of 9 close relatives participated in the studies. The findings showed that breathlessness restricted women with chronic obstructive pulmonary disease, to live with a breathing and body which they had to wait for. Stabilizing an ever-present breathlessness by restoring strength helped them manage everyday life and adapt to their limited abilities and energy. This restoration required detailed planning and a good knowledge of their breathing and bodies. Women were afraid of contracting life-threatening infections that would cause suffering. Fear led to isolation, and digital media were described as an important means of communication (I). Close relatives were of major importance to women with chronic obstructive pulmonary disease in their everyday life in terms of being flexible to accommodate the women’s needs. They were flexible, available, and on stand-by. The COVID-19 pandemic was experienced by close relatives as a reinforced threat to women with chronic obstructive pulmonary disease. Close relatives raised awareness of their vulnerability to potentially life-threatening infections, leading them to carefully avoid exposure and thus rely more on digital media. A more sedentary life was one effect of living in a gradually, yet controlled everyday life for close relatives. Women with chronic obstructive pulmonary disease stage III or IV and their close relatives expressed that they lacked continuity, participation, and support from healthcare professionals (I, II). In conclusion, the findings of this licentiate thesis show that women with chronic obstructive pulmonary disease stage III or IV and their close relatives experience both health and suffering in their everyday lives. By gaining understanding and insights into the lives of women with chronic obstructive pulmonary disease, as well as the needs and everyday challenges of their close relatives, better health outcomes can be supported.
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