| 1. |
- Hellqvist, Carina, 1976-
(författare)
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Self-management support to handle everyday life with Parkinson´s disease
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Being diagnosed with Parkinson´s disease (PD) is a life-altering experience. The long-term condition requires continuous adjustments to the everyday life not only of the person affected, but also for care partners. There is still insufficient knowledge on how best to support this process of acceptance and adjustment to encourage self-management.Aims: The aim of this thesis is to enhance the knowledge and understanding of self-management for persons with PD (PwPD) and their care partners. Furthermore, to investigate whether the self-management intervention Swedish National Parkinson School can be used as a tool to support self-management, and how nurses specialised in the care of persons with Parkinson´s disease can tailor their support to encourage self-management in everyday life. Method and design: Both qualitative and quantitative designs and methods were used in the three studies included in this thesis. Participants included a total of 209 persons. Of these, 127 were persons with PD and 75 were care partners. Participants with PD were largely in the middle stages of the disease. The time since diagnosis ranged from less than one year to over 20 years, and most participants had lived with the disease for around five years. Participants were cared for at five separate outpatient clinics, both geriatric and neurological, in three county and two university hospitals across Sweden. Data collection included observations, interviews, self-reported questionnaires and audio-recordings of the National Parkinson School in clinical care. The overall results of this thesis were obtained using a qualitative approach, where the results of the three studies were analysed using qualitative thematic analysis as described by Braun and Clarke (2006).Results: In combining the results of the separate studies through thematic analysis three distinct but interrelated themes were evident. These described the processes and efforts of persons to accept, manage and adjust to everyday life with PD. The theme “A changed reality” involves participants´ descriptions of how life changed after the diagnosis of PD. For many this was a shock, and both the person affected and their care partners experienced a variety of emotions such as anger, denial and hopelessness. It changed their personal identities, their perception of themselves as individuals and as a couple. They worried about what the future would hold, and the uncertainty was hard to accept and handle. One strategy for processing and beginning to acknowledge the new situation involved speaking openly about the diagnosis. The second theme “Finding a new path”, involves a description of how, after accepting or at least acknowledging, their new reality, participants started to find ways of managing the impact of PD on everyday life, incorporating it into their current life and identity. Many felt new knowledge was needed and turned to books and websites on PD. An intervention which was appreciated in terms of providing tools for self-observation and self-knowledge was the Swedish National Parkinson School. Participants later used these techniques to communicate and observe symptoms and healthcare needs. Being an active participant in life and performing activities such as physical exercise or other activities they enjoyed were also used as a strategy to feel satisfaction in life. Participants frequently worked out self-care and compensatory strategies to handle everyday tasks. Another strategy they found comforting and helpful involved retaining a positive mind-set and believing that a good future lay ahead. In the third category “The companions”, the participants described self-management in everyday life as a task they performed together. Management of PD was considered the shared responsibility of the person affected and the care partner, but was also influenced by others such as family members and close friends. The Swedish National Parkinson School provided knowledge as a form of common ground for the person affected and the care partner. During the Swedish National Parkinson School, the social interaction involved in exchanging experiences and feeling support from others in the same situation was considered helpful and was much appreciated.Conclusions: Management of PD in everyday life involves both the person affected and the care partner. After the initial emotional reactions, alongside feelings of lost identity and an altered life, persons started to look to the future and were ready to find ways of handling the changed conditions of their everyday lives. Persons with PD and their care partners were now willing to learn more about PD and to find tools and strategies to help them manage its impact on their everyday lives. During this phase, they appreciated the support of the Swedish National Parkinson School intervention. In the intervention, they would meet others in the same situation to find support and exchange experiences. They also turn to healthcare for support in the process of self-management in everyday life. Nurses working specifically to support PwPD and their CP will need to tailor support taking into account the disease trajectory as well as the psychological processes involved in accepting and adjusting to PD to best fit the unique needs and wishes of every person with PD and their care partner.
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| 2. |
- Andersson, Stefan
(författare)
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Information and Communication Technology : mediated support for working carers of older people
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called ‘working carers’, there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support.This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT.An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff’s experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers’ experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV).Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened.In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers’ needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier.Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers’ deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.
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| 3. |
- Melander, Catharina
(författare)
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Piecing together a fragmented world : Structures to promote the understanding of people with advanced dementia
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Understanding people with dementia whose verbal ability has been impaired is a complex and challenging task, even for professional nursing staff. The aim of this PhD thesis was to explore structures that may promote the understanding of people with advanced dementia living in nursing homes. It focusses specifically on (I) the clinical reasoning employed by assistant nurses when utilizing the NPI-NH (Neuropsychiatric Inventory Nursing Home version) as a tool to assess frequency and severity of BPSD (behavioural and psychological symptoms in dementia, i.e. problematic behaviours) in people with advanced dementia, (II) whether a sensor measuring electrodermal activity (EDA) can improve the identification of agitation in individuals with dementia, (III) how an EDA sensor impacts assistant nurses’ structured assessments of problematic behaviours amongst people with dementia and their choices of care interventions, and (IV) how Martha Nussbaum’s approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes. Study I used a method of discourse analysis that focussed on clinical reasoning utilized by assistant nurses when assessing problematic behaviours. In study II, a nonexperimental and correlational observation of the relationship between a sensor measuring EDA and assistant nurses’ structured observations of agitation in people with advanced dementia was applied. Study III used both quantitative and qualitative approaches; data were collected during structured assessments of problematic behaviours conducted by assistant nurses, as well as by focus group interviews with assistant nurses. Study IV took an ethnographic approach with participatory observations that were analyzed with a recursive analysis using a theoretical framework for the conditions necessary for a dignified human life. The structure of the NPI-NH provided a supportive framework that encouraged assistant nurses to discuss and broaden their understanding of the person with dementia (I). The EDA sensor provided continuous information regardless of staff presence and the potential to identify EDA prior to observing these behaviours (II, III), which supported the understanding of the person and when to introduce timely interventions to prevent the onset of problematic behaviours (III). The structure of Nussbaum’s approach to human capabilities illuminated that people with advanced dementia were at risk of living a life in which their opportunities for human capabilities were limited, and hence, the possibility to live a dignified life (IV). An overview of the findings in this thesis indicates that the studied structures were used to piece together fragments of information to create a comprehensive understanding of the needs of the person with dementia. For the structures to support the understanding of the person with dementia, it was crucial that nursing staff were present, attentive and engaged in each person’s situation in order for them to figure out how to piece together and integrate the structures into the overall understanding of the person and, based on that, formulate caring actions in daily life that are meaningful from the perspective of the person with advanced dementia.
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| 4. |
- Nilsson, Åsa, 1967-
(författare)
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Towards a shared understanding : Exploring encounters in hospital care from the perspectives of nurses and patients
- 2017
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this licentiate thesis was to describe encounters in hospital care from the perspectives of nurses and patients. It focuses specifically on nurses’ views of shortcomings in patient-care encounters in one hospital (I) and the meanings of participation in hospital care as narrated by patients (II). Three focus group discussions with 15 registered nurses were conducted, and data were analyzed using thematic content analysis (I). Narrative interviews were conducted with 15 patients in hospital care, and the interviews were analyzed with a phenomenological hermeneutic interpretation (II). This licentiate thesis shows that a shared understanding is considered as central for both the nurses and the patients in the hospital-care encounter. The nurses demonstrate the need to understand, to create space, and also to be available for vulnerable patients. The patients describe the need to be understood and to understand their own situations. This thesis suggests that positive encounters in hospital care imply that nurses need to take responsibility for creating a mutual dialogue where the patient experiences himself or herself as a co-creator in a trustful context. When nurses acknowledge and confirm the vulnerability of their patients, it becomes possible to support them to participate in an active manner. A well-functioning team, as well as a coherent environment, is, in this thesis, understood as a precondition for positive hospitalcare encounters.
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| 5. |
- Algilani, Samal, 1981-
(författare)
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To be at one's best : The evolution of Optimal Functionality and its possible implementation in an ICT-platform
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- At the Nutrition and Physical Activity Research Centre for Optimal Health and Functionality through Life (NUPARC), a research gap was uncovered regarding the concept optimal functionality based on the older adult’s own perspective. The overall aim was to explore the concept of optimal functionality among older adults and the possibility of creating and developing an ICT-platform to measure it. Method: An existing cohort from NUPARC was used for recruitment in studies I-III and to some extent study IV. A scoping study design and framework was adopted for the inclusion of the articles in Study I. Study II had a descriptive design. Six focus group discussions were conducted and analysed using qualitative deductive content analysis to extend the qualitative understanding. Study III used a phenomenological approach describing the experience of mental health and its impact on the ability to function as optimally as possible. Six interviews were analysed using Giorgi’s phenomenological approach. Study IV was a feasibility study and included 8 older adults using an ICTplatform for a period of four weeks. Results: Optimal Functionality comprises three major corner stones: Body-related factors, Self-related factors and External factors (I) accompanied by nine aspects, and according to older adults it is a matter of functioning as optimally as possible (II). The three major cornerstones are intricately linked and all but the mental aspects were included in the discussions (II). Life situations affecting mental health, consequences of mental health and strategies for maintaining good mental health were described by older adults as having an impact on mental health and affecting their ability to function as optimally as possible (III). The older adults managed the usage of an ICT-tool well and it was perceived as meaningful (IV). Conclusion: Optimal functionality is holistic, subjective, dynamic and applicable to all older adults. Identification of the factors involved can help the older adults on their path to health. An ICT-platform can facilitate the identification of the factors for optimal functionality and the eventual measurement of it.
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| 6. |
- Blusi, Madeleine, 1968-
(författare)
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E-health and information- and communication technology (ICT) as support systems for older family caregivers in rural areas
- 2014
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall objective of the thesis was to investigate how older family caregivers in rural areas experienced participation in an e-health based caregiver support system. Participants were 95 caregivers allocated to intervention group (n=63) and control group (n=32). The thesis had a mixed method design and is based on four original articles (I-IV). Data was collected through web-camera interviews (I-III), telephone interviews (II,IV) and questionnaires (II,IV) after 1.5 years of using e-health support. Quantitative data was analyzed using comparative statistics, multiple linear regression and logistic regression. Qualitative data was analyzed with content analysis. Article I showed that the caregivers, despite lacking experience from using computers, were able to adopt the new technology, with help from support nurses and family. Caregivers felt e-health helped them to regain social inclusion. Article II had a comparative design, comparing e-health support with conventional caregiver support. Caregivers using e-health were more satisfied with their support and found it to be available, flexible and helping them enhance caregiver competence. Control group caregivers were less satisfied with support and experienced unmet needs. Article III showed that e-health can reduce caregivers’ feelings of isolation. Two themes were created, Expanding the concept of place and Developing networks. Article IV revealed that caregivers used e-health frequently, experienced benefits from using it and had become more independent. Support nurses were disappointed about the decrease in contact with caregivers, and also acknowledged a need for developing the professional nursing role while working with e-health. Conclusions drawn from the findings were that participants experienced benefits from e-health support and it helped them become more independent. Swedish municipalities are obliged to provide caregiver support, the findings from the study are valid to conclude that e-health support are as good as, or even more effective, than conventional support for older family caregivers in rural areas.
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| 7. |
- Gabrielsson, Sebastian
(författare)
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A moral endeavour in a demoralizing context: Psychiatric inpatient care from the perspective of professional caregivers
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Patients in psychiatric care experience a need for and expect to develop interpersonal relationships with professional caregivers and to be respected and listened to. Despite demands for care to be person-centred and recovery-oriented, patients experience that psychiatric inpatient care fails to meet their expectations. Nursing research suggest that nurses aspire to engage with and meet the needs of patients, but that the strenuous reality of inpatient care prevents them from doing so. Exploring the content and context of psychiatric inpatient care from the perspective of professional caregivers might provide valuable insights regarding what caregivers do, and more importantly it can aid in understanding why they do what they do.This thesis aimed to explore the content and context of adult psychiatric inpatient care from the perspective of professional caregivers. This was achieved by clarifying the concept of person-centred care in the context of inpatient psychiatry, describing staff members’ reasoning on their choice of action and perceptions of interprofessional collaboration in challenging situations in inpatient psychiatric care settings, and exploring nurses’ experiences of good nursing practice in the specific context of inpatient psychiatry. A systematic review of the literature identified 34 scholarly papers that were analysed using evolutionary concept analysis. Focus group interviews were conducted with 26 professional caregivers and analysed using qualitative content analysis. Individual qualitative interviews were conducted with 12 skilled, relationship-oriented nurses and analysed using an interpretive descriptive approach to qualitative analysis.Reviewing the literature on person-centred care in inpatient psychiatry clarified how person-centred care is expected to result in quality care when interpersonal relationships are used to promote recovery. Professional caregivers’ reasoning on choice of action described different concerns in caregiver-patient interaction resulting in a focus on either meeting patients’ individual needs or solving staff members’ own problems. Describing professional caregivers’ perceptions of interprofessional collaboration suggested that they are being constrained by difficulties in collaborating with each other and a lack of interaction with patients. Exploring nurses’ experiences of good nursing practice revealed how circumstances in the clinical setting affect nurses’ ability to work through relationships. It is argued that these findings describe the workings of two opposing forces in psychiatric inpatient care. The concept of caring as a process forms the basis for discussing the content of care as a moral endeavour in which nurses strive to do good. The concept of demoralizing organizational processes is used to discuss the context of care as demoralizing and allowing for immoral actions.The main conclusions to be drawn are that, from a nursing perspective, nurses in psychiatric inpatient care need to focus on patients’ experiences and needs. For this they need sufficient resources and time to be present and develop relationships with patients.Nurses in psychiatric inpatient care also need to take personal responsibility for their professional practice. Attempts to transform psychiatric care in a person-centred direction must consider all of these aspects and their interrelatedness. Further research on psychiatric inpatient care is needed to understand more about how the content of care relates to the context of care.
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| 8. |
- Gardsten, Cecilia, 1961-
(författare)
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Personcentrerad IKT-tjänst förpersoner med typ 2-diabetes
- 2018
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Diabetes is a chronic disease affecting more and more people and placing increasing demands on health care. The increasing numbers of adults diagnosed with type 2 diabetes are in need of self-management strategies. Learning self-management includes mastering the skills required to complete the complex emotional and physical tasks necessary to manage well-being and to prevent future complications. A technological service developed with the participation of stakeholders may be an alternative way to meet rising needs for self-management. The involvement of various stakeholders enables cooperation, facilitates patient empowerment, and takes into consideration how adults with type 2 diabetes manage their everyday activities.Aim: The overall aim of the licentiate thesis is, by participatory research methods identify self-management support of a future ICT service to facilitate adults with type 2-diabetes.Methods: Two studies were conducted using participatory design (PD) with qualitative methods. Data were collected among recently diagnosed adults and those with longer experience of type 2 diabetes. The adults were recruited from a primary healthcare centre and from a diabetes hospital clinic in Sweden. Study I identified perceived challenges related to self-management among recently diagnosed adults and those with longer experience of type 2 diabetes by using multistage focus groups. Study II reported needs and wishes for an ICT self-management service to facilitate their everyday life and to deal with type 2 diabetes by using a future workshop.Results: Three main challenges were identified; understanding; developing skills and abilities; and mobilizing personal strengths. Both recently diagnosed adults and those with longer experience of diabetes described challenges in understanding the causes of fluctuating blood glucose and in developing and mobilizing skills for choosing healthful food and eating regularly. The recently diagnosed group were more challenged by learning to accept the diagnosis and becoming motivated to change habit while the experienced group were mainly challenged by issues about complications and medications. The adults with type 2 diabetes expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with the three suggestions; Trust in partnerships, Communication and Individualized information. Acceptance of the diagnosis was a prerequisite for managing diabetes successfully. Acceptance of the diagnosis also made the participants accept information, learn about their condition, and understand how to personally manage their everyday lives. Trust in partnership with caregivers and Communication facilitated that acceptance and understanding of the disease.Main findings: The adults with type 2 diabetes stated different needs for support during different phases of the disease. The expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with three other suggestions; Trust in partnerships, Communication, and Individualized information. The participants’ experience of the participatory methodology as a democratic process and their appreciation of mutual learning contributed to these results, which are consistent with the aims of person centred care.Conclusions: Adults with diabetes have different needs for support during different phases of the disease. From a person-centred perspective it would be desirable to meet individual needs for self-management on peoples’ own terms through a technological service that could reach and connect to a large number of people. Healthcare practitioners need to address the knowledge needs of patients with type 2 diabetes and support them in developing self-management skills. Consistent with person-centred care, practitioners should also encourage patients’ abilities to mobilize their own personal strengths to maintain self-management.
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| 9. |
- Halonen, Raija, et al.
(författare)
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WANTED! - Virtual Coach for People with Thorny Diseases
- 2018
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Ingår i: Proceedings of the 51st Annual Hawaii International Conference on System Sciences. - : University of Hawai'i at Manoa. ; , s. 2947-2956
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Konferensbidrag (refereegranskat)abstract
- The main objective of this study was to propose a concept for a virtual coach to be used by people who suffer from costly and challenging diseases such as dementia, depression, diabetes and cardiac related issues, and by their caretakers presenting healthcare service providers or family members of the people suffering from the named diseases. Those listed diseases form almost an unbearable burden for individual persons, their next-of-kin, and those providing health services. The construction of the concept was based on earlier knowledge, and guidelines proposed for design science research were applied. The proposed concept is to sketch a virtual coach that utilizes sensor-based data and written diaries, and that helps patients and their caretakers to get accurate and individual information to support everyday life and healthcare.
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| 10. |
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