| 1. |
- Liljeroos, Maria
(författare)
-
Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
- 2017
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
|
|
| 2. |
- Klompstra, Leonie, 1982-
(författare)
-
Physical activity in patients with heart failure : motivations, self-efficacy and the potential of exergaming
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Adherence to recommendations for physical activity is low in patients with heart failure (HF). It is essential to explore to what extent and why patients with HF are physically active. Self-efficacy and motivation for physical activity are important in becoming more physically active, but the role of self-efficacy in the relationship between motivation and physical activity in patients with HF is unknown. Alternative approaches to motivate and increase self-efficacy to exercise are needed. One of these alternatives might be using exergames (games to improve physical exercise). Therefore, it is important to obtain more knowledge on the potential of exergaming to increase physical activity.The overall aim was to describe the physical activity in patients with HF, with special focus on motivations and self-efficacy in physical activity, and to describe the potential of exergaming to improve exercise capacity.Methods: Study I (n = 154) and II (n = 101) in this thesis had a cross-sectional survey design. Study III (n = 32) was a 12-week pilot intervention study, including an exergame platform at home, with a pretest-posttest design. Study IV (n = 14) described the experiences of exergaming in patients who participated in the intervention group of a randomized controlled study in which they had access to an exergame platform at home.Results: In total, 34% of the patients with HF had a low level of physical activity, 46% had a moderate level, 23% reported a high level. Higher education, higher selfefficacy, and higher motivation were significantly associated with a higher amount of physical activity. Barriers to exercise were reported to be difficult to overcome and psychological motivations were the most important motivations to be physically active. Women had significantly higher total motivation to be physically active. Self-efficacy mediated the relationship between exercise motivation and physical activity; motivation leads to a higher self-efficacy towards physical activity.More than half of the patients significantly increased their exercise capacity after 12 weeks of using an exergame platform at home. Lower NYHA-class and shorter time since diagnosis were factors significantly related to the increase in exercise capacity. The mean time spent exergaming was 28 minutes per day. Having grandchildren and being male were related to more time spent exergaming.The analysis of the qualitative data resulted in three categories describing patients’ experience of exergaming: (i) making exergaming work, (ii) added value of exergaming, (iii) no appeal of exergaming.Conclusion: One-third of the patients with HF had a low level of physical activity in their daily life. Level of education, exercise self-efficacy, and motivation were important factors to take into account when advising patients with HF about physical activity. In addition to a high level of motivation to be physically active, it is important that patients with HF have a high degree of exercise self-efficacy.Exergaming has the potential to increase exercise capacity in patients with HF. The results also showed that this technology might be suitable for some patients while others may prefer other kinds of physical activity.
|
|
| 3. |
|
|
| 4. |
- Peterson, Gunnel, 1959-
(författare)
-
Neck muscle function in individuals with persistent pain and disability after whiplash injury
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Neck pain and disability are common after whiplash injury. One year after the accident up to 50 % still have symptoms called whiplash associated disorders (WAD). Despite decades of research the cause of persistent pain and disability are largely unknown and effective treatment and diagnostic tools are lacking. Altered neck muscle function may cause pain and disability, and real-time non-invasive methods that investigate both superficial and deep neck muscle function need to be evaluated.Aim: The general aim of the work presented in this thesis was to investigate mechanical neck muscle function and evaluate effects of three different exercise interventions related to neck muscle function in individuals with persistent pain and disability after whiplash injury.Method: The thesis comprised two studies, reported in four papers. Study A was a prospective randomized controlled trail with 216 participants. The effects of three exercise interventions; neck-specific exercises, neck-specific exercises with behavioral approach and prescription of physical activity were evaluated. Neck muscle endurance, perceived pain following testing, kinesiophobia and satisfaction with treatment were compared between the three groups (paper I). Study B was an experimental case-control study with participants consecutively recruited from the randomized controlled trial. Deformation and deformation rates in the neck muscles were investigated with real-time ultrasound imaging during ten repetitive arm elevations (paper II-IV). To investigate ventral neck muscles, 26 individuals with WAD were compared with 26 healthy controls (paper II). The dorsal neck muscles were investigated in paper III, including 40 individuals with WAD and 40 controls. In total 46 individuals, 23 with WAD and 23 healthy controls were included in paper IV to develop ventral neck muscle interaction models.Results: Paper I: Participants in the two neck-specific exercise groups (with and without behavioral approach) showed increased dorsal neck muscle endurance (p = 0.003), decreased pain intensity following testing (p = 0.04) and were more satisfied with treatment (p < 0.001) than participants in the prescribed physical activity group. Kinesiophobia did not significantly differ between groups (p > 0.12).Paper II: Deformation and deformation rate showed linear positive relationship between ventral muscle pairs in healthy controls, especially between superficial and deep neck muscles. This relationship was weaker or absent in the WAD group.Paper III: The WAD group had higher deformation rates in the deepest dorsal neck muscles during the first and tenth (only women) arm elevations compared to the control group (p < 0.04). Women in the WAD group showed a weaker linear relationship between the two deepest dorsal neck muscles compared to women in the control group.Paper IV: The results revealed two different ventral neck muscle models in individuals with WAD and healthy controls (R2Y = 0.72, Q2Y = 0.59). The models were capable to detect different neck muscle interplay in people with WAD.Conclusion: Neck-specific exercise intervention with or without a behavioral approach appears to improve neck muscle endurance in individuals with persistent WAD. Decreased pain after the neck muscle endurance test also suggests improved tolerance of load in these two groups. Altered mechanical neck muscle function was revealed in individuals with WAD indicating decreased muscular support for maintain a stable cervical spine during repetitive arm elevations. The results show great promise for improved diagnosis of neck muscle function in WAD.
|
|
| 5. |
- Nilsson, Evalill, 1966-
(författare)
-
Aspects of health-related quality of life : Associations with psychological and biological factors, and use as patient reported outcome in routine health care
- 2012
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background Health-related quality of life (HRQoL) is increasingly recognised as an important patient-reported outcome in health care research. However, the use is still restricted and several questions remain about the value and feasibility of using measures of HRQoL in routine health care. The general aims of the thesis were therefore to increase the understanding of these issues by studying 1) associations of HRQoL with psychological and biological factors, 2) comorbidity adjustments of HRQoL measurement results, and 3) the patient-perceived value and feasibility regarding the use of measures of HRQoL as patient-reported outcome in routine health care.Methods Three different data sets were used; baseline data (questionnaire, anthropometric, and biological) from the ongoing Life conditions, Stress, and Health Study (n=1007, papers I and II), data from a population survey from the County Council of Östergötland in combination with data from two national Swedish registries, the National Inpatient Register and the Causes of Death Register (n=6086, paper III), and data (questionnaire) from the multicentre Swedish Health Promoting Hospitals Network Health outcome assessment project (n=463, paper IV). The HRQoL measures used were the SF-36 and the EQ-5D. Statistical methods include variance, correlation and regression analyses.Results Psychological resources (Self-esteem, Sense of Coherence, and Perceived Control) as well as psychological risk factors (depressive mood) were found to relate independently to HRQoL (SF-36) in the expected directions (positive relations for resources and negative relations for risk factors), but with fewer sex differences than expected (Paper I). Low HRQoL (SF-36) was found to relate to higher levels of inflammatory biological factors (C-reactive protein, Interleukin-6, and MatrixMetalloProteinase-9), and, especially regarding Interleukin-6, many association remained significant, though attenuated, after adjustment for factors of known importance to HRQoL (age, sex, disease, lifestyle and psychological factors) (Paper II). A new comorbidity index, the Health-related Quality of Life Comorbidity Index (HRQL-CI), explicitly developed for use in HRQoL outcomes studies, showed higher explanatory power (higher R2 values) than the commonly used Charlson Comorbidity Index (CCI) regarding impact of comorbidity on HRQoL (SF-36 and EQ-5D). However, regarding mortality the CCI discriminated better between those who died within a year from answering the HRQoL questionnaires, died within ten years, or who were still alive after ten years. This result is in line with the CCI’s original purpose as a mortality predictor. Using morbidity data from mandatory, highly valid national health data bases was found to be useful in a large study of this kind, where using data from medical records might be impractical. (Paper III). Using measures of HRQoL as patient-reported outcome measures in routine health care was regarded as valuable by the majority of the patients in the Health outcome assessment project. A new concept was introduced, respondent satisfaction, and the respondent satisfaction summary score was in most cases equal, i.e. SF-36 and EQ-5D were found to be quite similar regarding the cognitive response process (understanding and responding to the items in the EQ-5D and the SF-36) and patient-perceived content validity (if EQ-5D and SF-36 gave patients the ability to describe their health in a comprehensive way) (Paper IV).Conclusions The four papers investigated different aspects of HRQoL that are important for the implementation of the use of measures of HRQoL within the health care system. In conclusion, 1) the use of measures of HRQoL to identify patients with low HRQoL for further health promoting interventions might be supported on a psychological (psychological resources are related to better HRQoL) and biological basis (low HRQoL being an important sign of increased biological vulnerability), 2) a comorbidity index specifically aimed to adjust for comorbidity in patient HRQoL outcomes studies was found to be valid in a normal population (that might serve as a reference population in future studies), and 3) patients perceived the use of measures of HRQoL to be valuable and feasible in routine health care, and questionnaire length and ease of response were not found to be crucial arguments in the choice between SF-36 and EQ-5D. Hence, in their own way, they all and together, contribute to removing obstacles in the implementation process of using patient-reported outcome measures in the health care system for quality improvement.
|
|
| 6. |
- Tegler, Helena
(författare)
-
Social Interaction Involving Non-speaking Children with Severe Cerebral Palsy and Intellectual Disability : The role of communication partners and speech-generating devices
- 2020
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to investigate the use of speech-generating device (SGD)-mediated interaction with children with anarthria, severe physical impairments and intellectual disabilities due to cerebral palsy with a focus on partner strategies and social practices.Studies I and II were cross-sectional studies that used questionnaires, which were analyzed using descriptive statistics and directed content analysis. In Study I, speech and language pathologists’ (SLPs) practices and perceptions of communication partner training in SGD-mediated interaction were examined. In Study II, communication partners’ (i.e., caregivers’, teachers’, and assistants’) practices and perceptions of communication partner training in SGD-mediated interaction were examined.Studies III and IV were qualitative observational studies that used video recordings, which were analyzed with ethnomethodological conversation analysis. Study III investigated how multiparty classroom interaction was organized when one of the students used an eye-gaze accessed SGD. Study IV explored the social actions that mobilized SGD-mediated responses when the child was a beginner user of the eye-gaze accessed SGD.The findings suggest the following: all participants (i.e., SLPs, caregivers, teachers, and assistants) considered that SGD-mediated interaction was beneficial for the children. SLPs were important providers but they provided few training sessions and used mostly verbal instructions. Communication partners could benefit from more support from SLPs and SLPs should consider using additional instructional approaches such as feedback and role-play when coaching communication partners in SGD-mediated interaction. Children could interact with their eye-gaze accessed SGDs in multiparty classroom interactions provided that the turn-taking in Initiation-Response-Evaluation (IRE) sequences was applied and that the teacher or the assistant provided contingent on-screen gaze and deictic scaffolding actions. Communication partners to children who were beginner users of an eye-gaze accessed SGD may need to produce repeated turn transition relevance places and use contingent on-screen gaze and deictic practices to scaffold an SGD-mediated response.This thesis brings new knowledge to the field of SGD-mediated interaction. Partner strategies that can enhance children’s linguistic skills were seldom used in multiparty classroom interaction, but other social practices were used, which facilitated social inclusion and participation.
|
|
| 7. |
- Lindgren, Ingrid
(författare)
-
Shoulder pain after stroke: prevalence, contributing factors and consequences in daily life
- 2013
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Post stroke shoulder pain, PSSP, is a common type of pain after stroke, but still further knowledge of this condition is needed. An increased knowledge of prevalence, contributing factors and impact on the individual’s life could enhance the possibility to find more effective treatments and therefore more studies are needed. The overall aim of this thesis was to evaluate PSSP with a special focus on prevalence, contributing factors and consequences in daily life. In an unselected stroke population of 327 individuals, the prevalence of PSSP was 22% four months post stroke. Predictors of PSSP (paper I) were shown to be severely affected arm motor function and severe impairments according to the National Institutes of Health Stroke Scale, (NIHSS). About 70% of the individuals with impaired sensorimotor function at stroke onset and PSSP at four months had still pain one year later. Predictors for long-lasting PSSP were left-sided hemiparesis, pain frequency and decreased passive shoulder abduction (paper II). In a group of 49 individuals with mild to moderate sensorimotor impairments post stroke (24 with and 25 without PSSP) and 11 healthy controls, somatosensory abnormalities were assessed with thermal and mechanical thresholds using the Quantitative Sensory Testing (QST) method. No significant difference in QST measurements were found between the groups with and without PSSP, but both stroke groups had generally higher thermal thresholds and more extreme low or high mechanical thresholds than the healthy controls (paper III). The association between PSSP, sensorimotor function, ability to perform daily hand activities, perceived participation and life satisfaction were evaluated in 24 individuals with and 25 individuals without PSSP, all with mild to moderate sensorimotor impairments. PSSP was associated with reduced motor function, but the PSSP had a weak association with daily hand activities, perceived participation and life satisfaction (paper IV). In conclusion, this thesis has shown that PSSP is common in individuals with decreased upper extremity motor function. Left-sided hemiparesis, pain frequency and decreased passive shoulder abduction seem to predict long-lasting PSSP. In individuals with mild to moderate upper extremity paresis, somatosensory impairments seem to have only a small impact on the pain and the PSSP appears to have a small impact on their life situation.
|
|
| 8. |
- Andin, Josefine
(författare)
-
Dealing with Digits : Arithmetic, Memory and Phonology in Deaf Signers
- 2014
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Deafness has been associated with poor abilities to deal with digits in the context of arithmetic and memory, and language modality-specific differences in the phonological similarity of digits have been shown to influence short-term memory (STM). Therefore, the overall aim of the present thesis was to find out whether language modality-specific differences in phonological processing between sign and speech can explain why deaf signers perform at lower levels than hearing peers when dealing with digits. To explore this aim, the role of phonological processing in digit-based arithmetic and memory tasks was investigated, using both behavioural and neuroimaging methods, in adult deaf signers and hearing non-signers, carefully matched on age, sex, education and non-verbal intelligence. To make task demands as equal as possible for both groups, and to control for material effects, arithmetic, phonological processing, STM and working memory (WM) were all assessed using the same presentation and response mode for both groups. The results suggested that in digit-based STM, phonological similarity of manual numerals causes deaf signers to perform more poorly than hearing non-signers. However, for digit-based WM there was no difference between the groups, possibly due to differences in allocation of resources during WM. This indicates that similar WM for the two groups can be generalized from lexical items to digits. Further, we found that in the present work deaf signers performed better than expected and on a par with hearing peers on all arithmetic tasks, except for multiplication, possibly because the groups studied here were very carefully matched. However, the neural networks recruited for arithmetic and phonology differed between groups. During multiplication tasks, deaf signers showed an increased reliance on cortex of the right parietal lobe complemented by the left inferior frontal gyrus. In contrast, hearing non-signers relied on cortex of the left frontal and parietal lobes during multiplication. This suggests that while hearing non-signers recruit phonology-dependent arithmetic fact retrieval processes for multiplication, deaf signers recruit non-verbal magnitude manipulation processes. For phonology, the hearing non-signers engaged left lateralized frontal and parietal areas within the classical perisylvian language network. In deaf signers, however, phonological processing was limited to cortex of the left occipital lobe, suggesting that sign-based phonological processing does not necessarily activate the classical language network. In conclusion, the findings of the present thesis suggest that language modality-specific differences between sign and speech in different ways can explain why deaf signers perform at lower levels than hearing non-signers on tasks that include dealing with digits.
|
|
| 9. |
- Nordin, Elise, 1985
(författare)
-
Effects of FODMAPs and gluten on irritable bowel syndrome- from self-reported symptoms to molecular profiling
- 2023
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Irritable bowel syndrome (IBS) is a complex disorder of gut-brain interactions. The diagnosis of IBS is based on subjective reporting of abdominal pain and altered bowel habits in the absence of any clinical alterations of the gut or other pathological conditions. Dietary regimens for symptom management include a low fermentable oligosaccharides, disaccharides, monosaccharides, and polyols (FODMAPs) diet and a gluten-free diet. However, scientific evidence supporting these dietary recommendations for managing IBS symptoms is weak: trials have been non-blinded and underpowered. While mechanistic understanding and objective markers of response remain scarce. Therefore, the aim of this thesis was to conduct a large double-blind study to investigate the effect of FODMAPs and gluten on symptomatic and molecular data including 16S rRNA analysis of the gut microbiota and metabolomics analyses, both at a group and subgroup (differential response) level. The resulting data served also to assess the accuracy of the Bristol Stool Form Scale (BSFS) used in IBS subtype diagnosis, and thus overcome the lack of objective evaluation of IBS symptoms. Trial data revealed that gluten caused no symptoms and FODMAPs triggered only modest symptoms of IBS, albeit with large inter-individual differences. Subjective reporting according to the BSFS conformed only modestly with stool water content in IBS, warranting caution towards IBS subtyping. FODMAPs increased saccharolytic microbial genera, phenolic-derived metabolites and 3-indolepropionate, but decreased bile acids. The genera Agathobacter, Anaerostipes, Fusicatenibacter, and Bifidobacterium correlated with increased plasma concentrations of phenolic-derived metabolites and 3-indolepropionate, i.e, metabolites related to decreased risk of incident type 2 diabetes and inflammation. Indeed, among FODMAP-related metabolites, only weak correlations to IBS symptoms were detected, as in the case of 3-indolepropionate to abdominal pain and interference with quality of life, warranting further investigation. Gluten displayed a modest effect on metabolites involved in lipid metabolism, including carnitine derivates, an acyl-CoA derivate, a medium-chain fatty acid, and an unknown lipid, but with no interpretable link to health. No molecular markers of a differential response were found, despite a comprehensive exploration with multiple analytical approaches. This could be explained by the absence of baseline variables, such as other omics layers or psychological factors, that could have determined the difference. In summary, the results indicate that gluten does not cause IBS symptoms. Moreover, the minor effect of FODMAPs on IBS symptoms must be weighed against their potential beneficial health effects. While the complexity of IBS likely explains the absence of molecular evidence for differential responses, such data analytical approach has potential where clear benefits of dietary interventions exist. Finally, the use of BSFS should include training for self-assessment, as a tool for subtyping IBS.
|
|
| 10. |
- Schenell, Ramona, 1978
(författare)
-
Att upprätthålla självbestämmande i palliativt skede på särskilt boende - en modell för att främja personcentrerad vård för äldre : Maintaining self-determination in palliative phase in residential care- a model to facilitate person-centred care for older persons
- 2020
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of the thesis was to develop a model that facilitates self-determination in the palliative phase in residential care. The three first studies constituted the ground for the model, which was developed in the fourth study. Study I. Persons residing in residential care were interviewed about self-determination in this hermeneutic study. The findings show that the residents are forced to adapt to new circumstances and that they are trying to navigate this forced situation. This is interpreted as a struggle for a dignified life. Study II. Quality of care and self-determination were evaluated and compared between residents and their family members. The findings show a high consistency in their experiences and an extensive need for improvements, especially in the psychosocial aspects of care. Study III. The findings in this interview study with staff, analysed using qualitative content analysis, revealed that the residents’ self-determination is connected to the maintenance of their self, and that their own abilities and others’ efforts strengthen their self-determination while their vulnerability and others’ dominance undermine it. Study IV. A model to facilitate self-determination was developed through participatory research involving different stakeholders. The core message, ‘in my way, at my pace, with the help of you’, emphasises the right to self-determination and the need for assistance to make it possible. The core message is supported by seven categories with strategies to facilitate self-determination. The conclusion of this thesis is that age and illness make residents dependent and reduce their self-determination. This threatens their dignity of identity. The model presents a person-centred approach that facilitates self-determination despite the many obstacles described in the studies.
|
|
