| 1. |
- Bratt, Anna S., 1969-
(författare)
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Surviving the loss of a child, a spouse, or both : Implications on life satisfaction and mortality in older ages
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Losing a loved one – a child or a spouse –is described as one of the most stressful or negative experience of a person’s life. Aging is associated with a higher risk of the death of close family members, yet few studies have investigated the impact of such losses on different health outcomes either by type of loss or by the combined loss of both a child and a spouse. This thesis is based on three studies examining the effect of bereavement on the health of older adults who have lost a child, spouse, or both and whether the different losses were associated with Life Satisfaction (LS) or mortality. The sample was collected from the Swedish National Study of Aging and Care (SNAC).The results showed that the loss of a child, spouse or both was experienced as among the three most important negative life events in the bereaved groups. About 70% of those bereaved of a child or a spouse mentioned these losses as among their three most important negative life experiences. In the child-and-spouse-bereaved group, 48% mentioned both losses while 40% mentioned only the loss of a child or a spouse, but not both. However, only marginally effects on LS and mortality after child, spouse or child-spouse bereavement in older adults was found. Longer time since the loss was associated with higher LS and lower mortality risk, and type of loss did not seem to determine LS or mortality. Gender differences were found: child-, spouse and child-and-spouse-bereaved men had lower LS than the corresponding groups of bereaved women, and furthermore, child-bereaved men had an increased mortality risk compared to child-bereaved women. Finally, significantly more women in the child-and-spouse-bereaved group compared to the men in this group, mentioned the loss of their child but not the spouse, among the three most important negative life events.
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| 2. |
- Liljeroos, Maria
(författare)
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Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
- 2017
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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.
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| 3. |
- Aho, Anna Carin
(författare)
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Living with recessive limb-girdle muscular dystrophy : affected young adults’ and parents’ perspectives, studied througha salutogenic framework
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis, using a salutogenic framework, was to develop knowledge about experiences and perceptions of living with recessive limb-girdle muscular dystrophy and its influences on health, from the affected young adults’ and their parents’ perspectives.Methods: A qualitative explorative and descriptive study design was used. Semi-structured interviews were held with 14 young adults diagnosed with recessive limb-girdle muscular dystrophy, aged 20–0 years, and 19 parents. Data analyses were conducted using content analysis (I, II, III) and phenomenography (IV). In order to mirror the interview data, the participants also answered the 13-item sense of coherence questionnaire.Findings: Recessive limb-girdle muscular dystrophy has a major impact on the affected young adults’ and their parents’ lives as the disease progresses. Health described in terms of well-being was thus perceived to be influenced, not only by physical, emotional and social consequences due to the disease and worry about disease progression but also by external factors, such as accessibility to support provided by society and other people’s attitudes. There was, however, a determination among the participants to try to make the best of the situation. The importance of being able to mobilize internal resources, having social support, meaningful daily activities, adapted environment, the young adult being seen as a person and having support from concerned professionals, including personal assistance when needed, was thereby described. Self-rated sense of coherence scores varied. Those who scored above or the same as median among the young adults (≥56) and the parents (≥68) expressed greater extent satisfaction regarding social relations, daily activities and external support than those who scored less than median.Conclusion: This thesis highlights the importance of early identification of personal perceptions and needs to enable timely health-promoting interventions. Through dialogue, not only support needed for the person to comprehend, manage and find meaning in everyday life can be identified, but also internal and external resources available to enhance health and well-being, taking into account the person’s social context as well as medical aspects.
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| 4. |
- Arvidsson, Patrik, 1969-
(författare)
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Assessment of participation in people with a mild intellectual disability
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this doctoral thesis was to explore an assessment of participation according to the International Classification of Functioning, Disability and Health (ICF) in people with a mild intellectual disability.Study I used secondary data and explored how participation can be assessed. Study II-IV explored participation empirically regarding 68 everyday activities from all nine life domains according to the ICF. Study II explored assessment of self-rated participation by investigating to what extent perceived ability, actual performance and perceived importance correlated. Study III-IV explored the contribution of perceived importance to an assessment of participation; study III by investigating frequencies of everyday activities regarding performance and importance separately as well as regarding combined measures of performance and perceived importance, and study IV by comparing proxy ratings with self-rated measures regarding ability and measures of participation. Study III also correlated measures of participation with a single-item measure of subjective general well-being and study II and IV investigated internal consistency in terms of Cronbach’s alpha. Study II and III included 55 and 69 individuals with intellectual disability respectively. Study IV included 40 individuals with intellectual disability and 40 proxy persons. The informants from the target group were partly the same.Study II and IV supported the suggestions from study I that participation should be assessed by self-ratings and study II found that this is an appropriate method also to people with a mild intellectual disability. Study III showed that participation is related to subjective well-being. Study III-IV found somewhat different results if measuring participation as performance solely or as a combination of performance and perceived importance. Overall, the results of the thesis suggest that performance solely might be sufficient to assess participation at a group level but in a clinical context, when the knowledge of a certain individual is of interest, the perceived aspect of involvement is necessary to include in an assessment of participation.
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| 5. |
- Boström, Katrin, 1955-
(författare)
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Living with deteriorating and hereditary disease : experiences over ten years of persons with muscular dystrophy and their next of kin
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to elucidate haw persona with muscular dystrophy (MD) and their next of kin experience and describe their daily lives over the last ten years. MD is a group of inherited disorders characterised by muscular weakness caused by muscle wasting. Both qualitative and quantitative methods were used. Forty-isx individuals with MD and 36 next of kin were interviewed (Studies I, III, IV). Both groups completed the questionnaire Subjective Quality of Life (SQoL), (Study V). Persons with MD also completed the questionnaires Sickness Impact Profile and Self-report ADL (Study II). The interviews were subjected to qualitative content analysis. The persons with MD described the change from being independent to being an individual in need of assistive devices and/or personal support to manage activities of every day life (StudyI). Besides muscular weakness persons with MD have hte strain it means to have a hereditary disease, which also affects the family (Study III). The deterioration during a decennium was primarily with regard to ambulation. The number of persons walking without assistive devices has decreased from 40 to 23 and that of those working has almost been halved, from 21 to 11 (Study II). Next of kin have a special vulnerability in form of an emotional and practical lonliness in addition to actual and anticipatory losses. The relationship was described as related to obligation and/or love. To have an orientation towards tasks (obligation) was linked to a feeling of being weighed down by demands, while having an orientation towards relationship (love) was linked to a feeling of quality in life (Study IV). The persons with MD scored lower on most items in the SQoL than the next of kin (Study V). Patients without a partner scored lower on QoL as a whole than those with a partner. Those with an early onset of disease scored lower on personal economy. Next of kin who gave daily help assessed their relationships to friends lower than those who gave weekly help (Study V). This thesis provides knowledge of the trajectory with MD over time on the basis of a ten-year follow up. It also broadens the knowledge of how the hereditary aspect is experienced both by those with MD and their next of kin. How the next of kin of adult persons with MD experience their situation is an issue that has been overlooked in previous research.
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| 6. |
- Engvall, Gunn
(författare)
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Cancer during Adolescence : Coping Shortly after Diagnosis and Psychosocial Function during the Acute and Extended Phase of Survival
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In this thesis coping shortly after diagnosis and psychosocial function during the acute and extended phase of survival was investigated for individuals struck by cancer during adolescence. Sixty-one participants were recruited and data were collected from four to eight weeks (T1) up to four years (T7) after diagnosis. Study I: the aim was to describe how participants (n=56) cope with cancer-related distress in response to closed and open-ended questions. In response to closed-ended questions, the majority reported emotion-focused strategies, and in response to open-ended questions they reported meaning-based and problem-focused strategies. Study II: the aim was to investigate nurses’ and physicians’ ability to identify which coping strategies participants (n=48) use. Neither nurses nor physicians were successful in identifying which strategies participants used, although physicians were somewhat better. Study III: the aim was to identify participants’ (n=61) psychosocial states. Three states were identified: poor (A), average (B), and good (C). From 18 months after diagnosis more participants than expected by chance were in state C. At T7 77% were in State C and 15% in State A. Female gender, divorced parents, and using distracting to cope was related to State A and B. Study IV: the aim was to describe negative and positive cancer-related consequences reported (n=32) three and four years after diagnosis and to establish whether using certain strategies at T1 was related to reports of certain consequences at T7. The majority reported negative and positive consequences and a relation between using distracting to cope at T1 and reporting bodily concerns at T7 was established. In conclusion: it is difficult for nurses and physicians to identify how adolescents recently diagnosed with cancer cope with distress; the majority of individuals diagnosed with cancer during adolescence experience a state of good psychosocial function during the extended phase of survival, and distress and personal growth often go hand in hand after cancer during adolescence.
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| 7. |
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| 8. |
- Pettersson, Ingvor, 1950-
(författare)
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The significance of assistive devices in the daily life of persons with stroke and their spouses
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this research project was to explore and describe the significance of assistive devices in daily life. The project involves two qualitative and two quantitative studies. Three of these studies were from the perspective of persons with stroke and one from the perspective of spouses of persons with stroke.A hermeneutic phenomenological lifeworld approach was used in the qualitative studies and data was obtained through conversational interviews with the two study groups, 22 persons with stroke and 12 spouses of persons with stroke, after the devices had been used for about a year.The results indicated that the lived experiences of assistive devices in respect of the different lifeworld existentials (lived body, lived space, lived time, lived human relation) are closely interconnected in both study groups. The lived body existential included aspects of habits, feelings and the incorporation, figuratively speaking, of the devices into their own bodies. Lived space concerned the gradual development of a new view of the environment and the devices’ role as a prerequisite for being able to live at home. The devices brought about a changed relation to lived time with respect to the temporal perspectives of past, present and future. To be able to take control of one’s own time was an important experience that the devices facilitated. Assistive devices were an integral part of the lived human relation between the couples in the study groups, as well as between the disabled persons/spouses and other people, including the health-care professionals. The devices contributed either to the maintenance or the change of social roles, but they sometimes also gave rise to the experience of being stigmatised. The results in the case of both study groups showed that the use of different devices is complex and often contradictory, especially when it comes to persons with stroke. Overall the persons’ experiences of the advantages of the devices overshadowed their experiences of the disadvantages.The quantitative studies included a pre- and post-assessment design. Thirty-two persons with disabilities after stroke were included. The impact of an outdoor powered wheelchair on activity and participation (IPPA, WHODAS II) and quality of life (PIADS, EQ-5D) was measured. Statistical analysis with mainly non-parametric tests was used to determine significant within-group and between-group changes after intervention. The conceptual framework ICF was used in one of the quantitative studies when classifying the participants’ stated problems.The results showed that the outdoor powered wheelchair is an essential device for persons with disabilities after stroke with regard to overcoming activity limitation and participation restrictions in everyday life. Furthermore it mostly has a positive impact on such users’ quality of life. However, it is also important to highlight the negative experiences of a few with regard to the use of powered wheelchairs. In sum, these results will enable prescribers to better understand the individual experiences of using assistive devices and the individuals’ and the families’ need for support in connection with the prescription of assistive devices, the particular example being powered wheelchairs.
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| 9. |
- Svantesson, Mia, 1960-
(författare)
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Postpone death? : Nurse-physician perspectives on life-sustaining treatment and ethics rounds
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The starting point of the present thesis is nurses’ reported experiences of disagreements with physicians for pushing life sustaining treatment too far. The overall aim was to describe and compare nurses’ and physicians’ perspectives on the boundaries for life-sustaining treatment and to evaluate whether ethics rounds could promote mutual understanding and stimulate ethical reflection. A mixed methods design with qualitative and quantitative data was used, including interviews and questionnaires. The health professionals’ experiences/perceptions were based on known patients foremost from general wards, but also intensive care units, at four Swedish hospitals. The first two studies treated the perspective on boundaries for life-sustaining treatment and the last two evaluated philosopher- ethicist led ethics rounds. Analysis of data was performed using a phenomenological approach and content analysis as well as comparative and descriptive non-parametric statistics. In the first study, the essence of the physicians’ decision-making process to limit life-sustaining treatment for ICU patients, was a process of principally medical considerations in discussions with other physicians. In the second study, there were more similarities than differences between nurses’ and physicians’ opinions regarding the 714 patients studied. The physicians considered limited treatment as often as the nurses did. The ethics rounds studies generated mixed experiences/perceptions. It seemed that more progress was made toward the goal of promoting mutual understanding than toward the goal of stimulating ethical reflection. Above all, the rounds seemed to meet the need for a forum for crossing over professional boundaries. The most salient finding was the insight to enhance team collaboration, that the interprofessional dialogue was sure to continue. Predominating new insights after rounds were interpreted as corresponding to a hermeneutic approach. One of nurses’ negative experiences of the ethics rounds was associated with the lack of solutions. Based on the present findings, one suggestion for improvement of the model of ethics rounds is made with regard to achieving a balance between ethical analyses, conflict resolution and problem solving. In conclusion, the present thesis provides strong evidence that differences in opinions regarding boundaries for life-sustaining treatment are not associated with professional status. The findings support the notion of a collaborative team approach to end-of-life decision-making for patients with diminished decisionmaking capacity. There is an indication that stimulation of ethical reflection in relation to known patients may foremost yield psychosocial insights. This could imply that social conflicts may overshadow ethical analysis or that ethical conflicts and social conflicts are impossible to distinguish.
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| 10. |
- Arving, Cecilia, 1961-
(författare)
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Individual psychosocial support for breast cancer patients : Quality of life, psychological effects, patient satisfaction, health care utilization and costs
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- A randomized intervention study, with the aim to compare the effects of individual psychosocial support provided by (1) oncology nurses specially trained in psychological techniques (INS), or (2) psychologists (IPS), to (3) standard care (SC). Breast cancer patients, living in Uppsala County, and about to start adjuvant treatment at the Department of Oncology, Uppsala, were consecutively included between 1998 and 2000. The patients were assessed seven times during two years by self-administered questionnaires. Study I revealed positive effects of both INS and IPS as compared to SC on global quality of life, side effects, and post-traumatic distress. A lower proportion of patients in the intervention groups had psychosocial support provided in routine care compared with the SC group. In study II the patients reported being highly satisfied with the intervention, irrespective of profession providing the support. However, patients in the INS group reported higher levels of benefit regarding disease-related problems than those in the IPS group. In study III total Health Care costs were lower in the intervention groups and since a gain in quality-adjusted life years (QALY) was seen (mean .1 QALY), the interventions dominated. The costs for the interventions were 44 291- 48 978 SEK. In study IV, daily reporting of anxiety, depression and activity on Visual Analogue Scales (VAS) were completed during two weeks before and after the Hospital Anxiety and Depression Scale (HADS) assessments. A point assessment with the HADS captured the situation better than four weeks assessment on three VAS in the diary. The HADS was considered preferable to the diary. The conclusion is that psychosocial support is beneficial for breast cancer patients and that the intervention delivered by nurses was as effective as that given by psychologists. The costs for the interventions were limited.
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