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- 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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- Forsberg, Anette, 1965-, et al.
(författare)
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Balancing everyday life two years after falling ill with Guillain-Barre syndrome : a qualitative study
- 2015
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Ingår i: Clinical Rehabilitation. - London, United Kingdom : Sage Publications. - 0269-2155 .- 1477-0873. ; 29:6, s. 601-610
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim was to describe experiences of disability in everyday life and managing the recovery process two years after falling ill with Guillain-Barré syndrome.Design: Qualitative interview study.Methods: Interviews were conducted with 35 persons (22 male, mean age 50 years) two years after the onset of Guillain-Barré syndrome. The interviews were transcribed verbatim and analysed using content analysis.Results: The analysis revealed four categories and an overall theme: ‘Striving for balance in everyday life’. The participants described persistent lived body restrictions that affected their arms, legs, and face. Bodily symptoms and loss of energy limited or restricted many everyday activities. In connection with healthcare, both satisfaction and feeling vulnerable in a critical situation were described. Experiences of the recovery process varied. The participants described acceptance and reappraisal of a new life situation despite their limitations, and having gained the knowledge that life can change suddenly. However, they also expressed disappointment following an overly positive prognosis in the early stages, and over a continuous wait for recovery. For some participants life had returned to as before.Conclusion: The participants experienced limitations in everyday life and decreased functioning in several parts of the body. The recovery process may still be ongoing two years after onset. Rehabilitation intervention with an extended focus on supporting individualized coping processes could facilitate ways to live with persistent disability.
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- Magnusson, Lina, et al.
(författare)
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Malawian prosthetic and orthotic users' mobility and satisfaction with their lower limb assistive device
- 2013
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Ingår i: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 45:4, s. 385-391
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To investigate patients’ mobility and satisfaction with their lower limb prosthetic or orthotic device and related service delivery in Malawi and to compare groups of patients regarding type and level of device and demographics.METHODS: Questionnaires were used to collect self-report data from 83 patients.RESULTS: Ninety percent of prostheses or orthoses were in use by patients, but approximately half of these needed repair. Thirty-nine percent reported pain when using their assistive device. The majority of patients were able to rise from a chair (77%), move around the home (80%), walk on uneven ground (59%) and travel by bus or car (56%). However, patients had difficulties walking up and down hills (78%) and stairs (60%). In general, patients were quite satisfied with their assistive device (mean of 3.9 out of 5) and very satisfied with the service provided (mean of 4.4 out of 5). Access to repairs and servicing were rated as most important, followed by durability and follow-up services. Lack of finances to pay for transport was a barrier to accessing the prosthetic and orthotic centre.CONCLUSION: Patients were satisfied with the assistive device and service received, despite reporting pain associated with use of the device and difficulties ambulating on challenging surfaces.
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- Magnusson, Lina, et al.
(författare)
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Mobility and satisfaction with lower-limb prostheses and orthoses among users in Sierra Leone: A cross-sectional study
- 2014
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Ingår i: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1651-2081 .- 1650-1977. ; 46:5, s. 438-446
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate patients' mobility and satisfaction with their lower-limb prosthetic or orthotic device and related service delivery in Sierra Leone; to compare groups of patients regarding type and level of assistive device, gender, area of residence, income; and to identify factors associated with satisfaction with the assistive device and service. Methods: A total of 139 patients answered questionnaires, including the Quebec User Evaluation of Satisfaction with Assistive Technology questionnaire (QUEST 2.0). Results: Eighty-six percent of assistive devices were in use, but half needed repair. Thirty-three percent of patients reported pain when using their assistive device. Patients had difficulties or could not walk at all on: uneven ground (65%); hills (75%); and stairs (66%). Patients were quite satisfied with their assistive device and the service (mean 3.7 out of 5 in QUEST), but reported 886 problems. Approximately half of the patients could not access services. In relation to mobility and service delivery, women, orthotic patients and patients using above-knee assistive devices had the poorest results. The general condition of the assistive device and patients' ability to walk on uneven ground were associated with satisfaction with the assistive devices and service. Conclusion: Patients reported high levels of mobility while using their device although they experienced pain and difficulties walking on challenging surfaces. Limitations in the effectiveness of assistive devices and limited access to follow-up services and repairs were issues desired to be addressed.
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- Ahlström, Gerd, et al.
(författare)
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Enjoying work or Burdened by it? : How personal Assistants Experience and Handle Stress at Work
- 2012
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Ingår i: Journal of Social Work in Disability & Rehabilitation. - : Routledge. - 1536-710X .- 1536-7118. ; 11:2, s. 112-127
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Tidskriftsartikel (refereegranskat)abstract
- A personal assistant has to promote equality in living conditions for persons with severe disabilities. The aim of this study was to explore how personal assistants experience their work and what strategies they employ to alleviate work-related stress. Thirty personal assistants were interviewed and latent content analysis was performed. The findings regarding the experiences of work-related stress could be brought together under the theme of “difficulties of being in a subordinate position,” and those regarding management strategies could be brought together under the theme of “coming to terms with the work situation.” There is a need to empower personal assistants through training programs including tailored education, working communities, and coaching.
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- Magnusson, Lina, et al.
(författare)
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Experiences of providing prosthetic and orthotic services in Sierra Leone - the local staff's perspective
- 2012
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 34:24, s. 2111-2118
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Tidskriftsartikel (refereegranskat)abstract
- In Sierra Leone, West Africa, there are many people with disabilities in need of rehabilitation services after a long civil war. Purpose: The aim of this qualitative study was to explore the experiences of prosthetic and orthotic service delivery in Sierra Leone from the local staff's perspective. Method: Fifteen prosthetic and orthotic technicians working at all the rehabilitation centres providing prosthetic and orthotic services in Sierra Leone were interviewed. The interviews were transcribed and subjected to latent content analysis. Results: One main theme emerged: sense of inability to deliver high-quality prosthetic and orthotic services. This main theme was generated from eight sub-themes: Desire for professional development; appraisals of work satisfaction and norms; patients neglected by family; limited access to the prosthetic and orthotic services available; problems with materials and machines; low public awareness concerning disabilities; marginalisation in society and low priority on the part of government. Conclusions: The findings illustrated traditional beliefs about the causes of disability and that the public's attitude needs to change to include and value people with disabilities. Support from international organisations was considered necessary as well as educating more prosthetic and orthotic staff to a higher level.
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- Norrbäck, Mattias, et al.
(författare)
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The impact on social capital of mobility disability and weight status: The Stockholm Public Health Cohort.
- 2015
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Ingår i: Disability and Health Journal. - : Elsevier BV. - 1936-6574 .- 1876-7583. ; 8:2, s. 200-207
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Tidskriftsartikel (refereegranskat)abstract
- People with mobility disability are more often overweight or obese and have lower social capital than people without mobility disability. It is unclear whether having a combination of mobility disability and overweight or obesity furthers negative development of social capital over time.
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- Nygårdh, Annette, et al.
(författare)
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The complexity in the implementation process of empowerment-based chronic kidney care : a case study
- 2014
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Ingår i: BMC Nursing. - : BioMed Central (BMC). - 1472-6955 .- 1472-6955. ; 13:1, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- Background: This study is part of an interactive improvement intervention aimed to facilitate empowerment-based chronic kidney care using data from persons with CKD and their family members. There are many challenges to implementing empowerment-based care, and it is therefore necessary to study the implementation process. The aim of this study was to generate knowledge regarding the implementation process of an improvement intervention of empowerment for those who require chronic kidney care.Methods: A prospective single qualitative case study was chosen to follow the process of the implementation over a two year period. Twelve health care professionals were selected based on their various role(s) in the implementation of the improvement intervention. Data collection comprised of digitally recorded project group meetings, field notes of the meetings, and individual interviews before and after the improvement project. These multiple data were analyzed using qualitative latent content analysis.Results: Two facilitator themes emerged: Moving spirit and Encouragement. The healthcare professionals described a willingness to individualize care and to increase their professional development in the field of chronic kidney care. The implementation process was strongly reinforced by both the researchers working interactively with the staff, and the project group. One theme emerged as a barrier: the Limitations of the organization. Changes in the organization hindered the implementation of the intervention throughout the study period, and the lack of interplay in the organization most impeded the process.Conclusions: The findings indicated the complexity of maintaining a sustainable and lasting implementation over a period of two years. Implementing empowerment-based care was found to be facilitated by the cooperation between all involved healthcare professionals. Furthermore, long-term improvement interventions need strong encouragement from all levels of the organization to maintain engagement, even when it is initiated by the health care professionals themselves.
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