| 1. |
- Alafuzoff, I, et al.
(författare)
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A comparison of multiplex and simplex families with Alzheimer's disease/senile dementia of Alzheimer type within a well defined population.
- 1994
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Ingår i: Journal of neural transmission. Parkinson's disease and dementia section. - 0936-3076. ; 7:1, s. 61-72
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Tidskriftsartikel (refereegranskat)abstract
- A study was made on 150 clinically demented patients presenting at autopsy at Umeå University Hospital in Sweden. In 90 of the cases dementia was considered to be primary in nature and of these forty six per cent (41 cases), fulfilled both the clinical and histopathological criteria for the diagnosis of Alzheimer's disease/Senile dementia of Alzheimer type (AD/SDAT). The families of these 41 AD/SDAT cases were then studied, and a family history obtained through interviews with multiple family informants and from civil and medical records. Additional diseased family members suffering from progressive dementia (multiplex families) were observed in 12 probands out of 41 (29%). Multiplex families exhibited similar clinical and histopathological characteristics as simplex families containing a single affected individual. The secondary cases in the multiplex families exhibited similar demographic and clinical characteristics as the probands. 39% of the multiplex and 14% of the simplex cases had an early age of onset of the disease, that was under 65 years. The overall prevalence of progressive dementia disorders in the 41 families was 5.9%. The prevalence of a progressive dementia disorder was 11% in the multiplex families (14% for the early onset cases) and 3.5% in the simplex families (2% for the early onset cases). The prevalence of progressive dementia disorder for family members who had passed the mean age of the onset of the disease for their family, was 45% for multiplex and 18% for simplex families. Furthermore the incidence rate for dementia was significantly higher (p < 0.005) in multiplex families (5.5 per 1,000 person years) when compared to simplex families (2.5 per 1,000 person years). No differences could be seen in parental age at birth of the diseased when comparing the two sets of families. However in multiplex families the duration of the disease was significantly (p < 0.025) shorter, in subjects with parental age at birth over 35 years compared to those with a parental age under 35 years. The multiplex families contained significantly (p < 0.025) larger sibships; and showed a significantly lower age of onset for the disease (p < 0.001), and a significantly longer duration of disease (p < 0.05) compared to the simplex families. A significant intra familial correlation of age at disease onset was observed in both sets of the families.
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| 2. |
- Aléx, Lena, et al.
(författare)
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Balancing within various discourses--the art of being old and living as a Sami woman.
- 2006
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Ingår i: Health Care for Women International. - : Informa UK Limited. - 0739-9332 .- 1096-4665. ; 27:10, s. 873-92
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this part of the Umeå 85+ Study was to explore how indigenous women narrate their lives and their experience of being old as Sami women. Interviews with 9 old Sami women were analyzed using grounded theory. The categories identified were "reindeer as the basis of life," "longing for significant Sami values," "feeling valued as a Sami woman," and "changing for survival;" these evolved into the core category: "balancing within various discourses-the art of being old and living as a Sami woman." Knowing how to balance provided the ability to make use of available opportunities.
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| 3. |
- Aléx, Lena, 1948-, et al.
(författare)
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Construction of masculinities among men aged 85 and older in the north of Sweden.
- 2008
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 17:4, s. 451-9
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim was to analyse the construction of masculinities among men aged 85 and older. BACKGROUND: All societies have a gender order, constructed from multiple ideas of what is seen as feminine and masculine. As the group of men aged 85 and older is increasing in size and their demand for care will increase, we must recognize the importance of studying these men and various discourses of masculinities. DESIGN: Qualitative explorative. METHODS: Qualitative content analysis was used to analyse thematic narratives. Masculinity theories provided the point of departure for the analysis. RESULTS: The analysis coalesced into three masculinities. 'Being in the male centre', developed from subthemes as: taking pride in one's work and economic situation; being in the centre in relation to others; regarding women as sexual objects; and belonging to a select group. 'Striving to maintain the male facade' developed from subthemes as: emphasizing 'important' connections; having feelings of loss; striving to maintain old norms and rejecting the fact of being old. 'Being related' was formulated from subthemes as: feeling at home with domestic duties; being concerned; accepting one's own aging; and reflecting on life. CONCLUSIONS: Our study indicates the importance of being aware of the existence of multiple masculinities, in contrast to the generally unproblematic and unsubtle particular healthcare approaches which consider men as simply belonging to one masculinity. Relevance to clinical practice. Diverse masculinities probably affect encounters between men and healthcare providers and others who work with an older population and therefore our results are of importance in a caring context.
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| 4. |
- Aléx, Lena, et al.
(författare)
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Constructions of various femininities among the oldest old women.
- 2006
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Ingår i: Health Care for Women International. - Washington, D.C. : Informa UK Limited. - 0739-9332 .- 1096-4665. ; 27:10, s. 853-72
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Tidskriftsartikel (refereegranskat)abstract
- This study forms part of the Umeå 85+ Study, and the aim was to explore various gendered constructions of femininities among the oldest old women. Femininities are seen as various ways of shaping oneself as a woman in relation to the impact of historical, social, and cultural circumstances. Thematic narratives were analyzed using qualitative content analysis. Through interpreting these narratives in the light of gender theories, we were able to discern four femininities: "being connected," "being an actor," "living in the shadow of others," and "being alienated." The oldest old women displayed complex outlooks on femininities, and no femininity was interpreted as being in the center related to the other femininities. Further research is needed in order to disclose the complexity of femininities related to factors such as social class, ethnicity, and financial situation among the oldest old, and to acquire a greater knowledge of various femininities.
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| 5. |
- Alvariza, Anette, et al.
(författare)
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Family members' experiences of integrated palliative advanced home and heart failure care : a qualitative study of the PREFER intervention
- 2018
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Ingår i: Palliative & Supportive Care. - New York : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:3, s. 278-285
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.
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| 6. |
- Audulv, Åsa, 1980-, et al.
(författare)
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An ongoing process of inner negotiation – a Grounded Theory study of self-management among people living with chronic illness
- 2009
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Ingår i: Journal of Nursing and Healthcare of Chronic Illness. - : Wiley. - 1752-9816 .- 1752-9824. ; 1:4, s. 283-293
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Tidskriftsartikel (refereegranskat)abstract
- Aim. The aim of this study was to better understand the main concern of self-management processes among people with chronic illness.Background. One aspect of living with chronic illness is self-management that can reduce the illness impact on daily life and promote future health. Although factors that influence self-management have been identified in previous research, little attention has been brought to the process of making self-management decisions. In clinical settings, use of a theory could facilitate patient-empowering approaches.Method. The data collection for this Grounded Theory was mostly conducted in 2006. Data were collected by interviews with 26 adults with a variety of chronic illnesses, including rheumatoid arthritis, diabetes mellitus, inflammatory bowel syndrome, multiple sclerosis, ischaemic heart disease and chronic kidney failure.Results. Individuals are conflicted by competing preferences when taking decisions about self-management. Consequently, the decision-making process can be understood as an ongoing inner negotiation between different incompatible perspectives, e.g. social needs vs. medical needs. The process of negotiating self-management starts with the individual’s considering beliefs about health and illness, which make the individual face illness threats and the need for self-management. Several aspects influence negotiating self-management namely, assessing effects of self-management; evaluating own capacity; perceiving normality or stigmatisation; and experiencing support and external resources. The process has been demonstrated in a model.Conclusions. The process of negotiating self-management is an ongoing inner debate rather than a one-time decision. This opens up new ways of understanding, and communicating with, patients. The described model also links behavioural theories and research findings in a comprehensive understanding.Relevance to clinical practice. This model could be applicable as a communication tool for health-care providers in identifying barriers to, and resources in, self-management behaviour among individuals with chronic illness.
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| 7. |
- Audulv, Åsa, et al.
(författare)
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Qualitative longitudinal research in health research : a method study
- 2022
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Ingår i: BMC Medical Research Methodology. - : BioMed Central (BMC). - 1471-2288. ; 22:1
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Forskningsöversikt (refereegranskat)abstract
- Background: Qualitative longitudinal research (QLR) comprises qualitative studies, with repeated data collection, that focus on the temporality (e.g., time and change) of a phenomenon. The use of QLR is increasing in health research since many topics within health involve change (e.g., progressive illness, rehabilitation). A method study can provide an insightful understanding of the use, trends and variations within this approach. The aim of this study was to map how QLR articles within the existing health research literature are designed to capture aspects of time and/or change.Methods: This method study used an adapted scoping review design. Articles were eligible if they were written in English, published between 2017 and 2019, and reported results from qualitative data collected at different time points/time waves with the same sample or in the same setting. Articles were identified using EBSCOhost. Two independent reviewers performed the screening, selection and charting.Results: A total of 299 articles were included. There was great variation among the articles in the use of methodological traditions, type of data, length of data collection, and components of longitudinal data collection. However, the majority of articles represented large studies and were based on individual interview data. Approximately half of the articles self-identified as QLR studies or as following a QLR design, although slightly less than 20% of them included QLR method literature in their method sections.Conclusions: QLR is often used in large complex studies. Some articles were thoroughly designed to capture time/change throughout the methodology, aim and data collection, while other articles included few elements of QLR. Longitudinal data collection includes several components, such as what entities are followed across time, the tempo of data collection, and to what extent the data collection is preplanned or adapted across time. Therefore, there are several practices and possibilities researchers should consider before starting a QLR project.
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| 8. |
- Audulv, Åsa, et al.
(författare)
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Time and change : a typology for presenting research findings in qualitative longitudinal research
- 2023
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Ingår i: BMC Medical Research Methodology. - : BioMed Central (BMC). - 1471-2288. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Qualitative longitudinal research (QLR) is an emerging methodology used in health research. The method literature states that the change in a phenomenon through time should be the focus of any QLR study, but in empirical studies, the analysis of changes through time is often poorly described, and the emphasis on time/change in the findings varies greatly. This inconsistency might depend on limitations in the existing method literature in terms of describing how QLR studies can present findings. The aim of this study was to develop and describe a typology of alternative approaches for integrating time and/or change in QLR findings.Methods: In this method study, we used an adapted scoping review design. Articles were identified using EBSCOhost. In total, methods and results sections from 299 QLR articles in the field of health research were analyzed with inspiration from content analysis.Results: We constructed a typology of three types and seven subtypes. The types were based on the underlying structural principles of how time/change was presented: Type A) Findings have a low utilization of longitudinal data, Type B) Findings are structured according to chronological time, and Type C) Findings focus on changes through time. These types differed in 1) the way the main focus was on time, change or neither; 2) the level of interpretation in the findings; and 3) how theoretical understandings of time/change were articulated in the articles. Each type encompassed two or three subtypes that represented distinct approaches to the aim and results presentation of QLR findings.Conclusions: This method study is the first to describe a coherent and comprehensive typology of alternative approaches for integrating time/change into QLR findings in health research. By providing examples of various subtypes that can be used for results presentations, it can help researchers make informed decisions suitable to their research intent.
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| 9. |
- Audulv, Åsa, et al.
(författare)
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Who's in charge? The role of responsibility attribution in self-management among people with chronic illness
- 2010
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Ingår i: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134. ; 81:1, s. 94-100
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To explore how responsibility attribution influences self-management regimens among people with chronic illness.METHODS: This qualitative content analysis included 26 interviews with people living with chronic illness.RESULTS: The participants attributed responsibility to internal, external or a combination of these factors, meaning that they either assumed responsibility for self-management or considered other people or factors responsible. Internal responsibility was associated with a multifaceted self-management regimen, whereas external responsibility was related to "conventional" self-management such as taking medication, managing symptoms and lifestyle changes.CONCLUSION: How responsibility is attributed is vital for the way in which individuals perform self-management. In this study, those who attributed responsibility to external factors mainly performed recommended behaviours to control their illness. In contrast, to take charge of their illness and be an active participant in the care, individuals must take responsibility for themselves, i.e. internal responsibility.PRACTICE IMPLICATIONS: Health-care providers should acknowledge and support individuals' wishes about various levels of responsibility as well as different kinds of patient-provider relationships.
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| 10. |
- Augutis, Marika, et al.
(författare)
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Psychosocial aspects of traumatic spinal cord injury with onset during adolescence : A qualitative study
- 2007
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Ingår i: Journal of Spinal Cord Medicine (JSCM). - : Informa UK Limited. - 1079-0268 .- 2045-7723. ; 30:Suppl1, s. 55-64
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND/OBJECTIVE: Spinal cord injury (SCI) occurring during adolescence poses additional challenges because of the concurrent age-specific bio-psychosocial development. Full understanding of the psychosocial dimensions of rehabilitation requires exploration of the patient perspective. The objective of this study was to focus on psychosocial factors from the patient perspective in persons who had previously sustained a SCI during early and mid-adolescence (11-15 years of age).METHODS: Twenty-four of the 28 persons who had sustained a SCI in Sweden from 1985 to 1996 participated in the study. Semistructured interviews were made an average of 10 years after injury. Narratives were analyzed qualitatively according to content analysis.RESULTS: Parents and peers were found to have formed a crucial network. Parents frequently acted as advocates in interactions with health care providers, as supporters, and as containers of sorrow, frustration, and anger. Peers acted as promoters of activity and identity development. However, health care providers were perceived as not making sufficient use of this network.CONCLUSIONS: Rehabilitation professionals might be encouraged to increase their knowledge of adolescence medicine to better meet the specific needs and demands of persons in this age group. It is further suggested that parents and peers be considered important partners in the joint rehabilitation effort.
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