| 1. |
- 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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| 2. |
- Rosén, Helena, et al.
(författare)
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Being the next of kin of an older person living in a nursing home : an interview study about quality of life
- 2019
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Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318 .- 1471-2318. ; 19:1, s. 1-12
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Tidskriftsartikel (refereegranskat)abstract
- Background The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care. Methods This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes. Results The next of kin's experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple'slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person's vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin. Conclusions The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person's health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin.
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| 3. |
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| 4. |
- Björk, Tabita, et al.
(författare)
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The patient’s perception of having recovered from an eating disorder
- 2008
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Ingår i: Health Care for Women International. - : Informa UK Limited. - 0739-9332 .- 1096-4665. ; 29:8-9, s. 926-944
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Tidskriftsartikel (refereegranskat)abstract
- Our aim in this study was to describe how patients perceive having recovered from eating disorders. A qualitative method with a phenomenographic approach was used to identify various ways of experiencing recovery. Four categories emerged, describing how the subjects now relate in a relaxed and accepting manner to food, the body, themselves as individuals, and their social environment. Some perceived recovery as coping with emotions, while others experienced themselves as healthier than people in general regarding food and weight. Different aspects were emphasized as important for recovery. As long as patients perceive themselves as recovered, it is not necessary that they fulfill all conceivable criteria for recovery.
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| 5. |
- Löf, Lennart, et al.
(författare)
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ICU patients' recall of emotional reactions in the trajectory from falling critically ill to hospital discharge : follow-ups after 3 and 12 months
- 2008
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Ingår i: Intensive & Critical Care Nursing. - Edinburgh : Churchill Livingstone. - 0964-3397 .- 1532-4036. ; 24:2, s. 108-121
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Tidskriftsartikel (refereegranskat)abstract
- Patients' memories of frightening ICU experiences may be a threat to later psychological recovery. The purpose of the study is to describe ICU patients' recall of their emotional reactions, from falling critically ill to hospital discharge; this at 3 and 12 months following discharge from the ICU. The study is qualitative and concerns eight ICU patients ventilated for more than 72h. The participants were interviewed twice and the data were subjected to qualitative content analysis. It emerged that the memories of emotions during the trajectory of critical illness were extensive, detailed and strong, and that unpleasant emotions were clearly stable over time. At 12 months as compared with 3 months, the unpleasant emotions were less intense and had less prominent; furthermore the ICU care was more greatly associated with a sense of security, and there was greater recall of caring doctors and nurses (though not of their names) as well as next of kin. CONCLUSIONS: The study generated knowledge not previously described about how ICU patients' recollection of their emotions during the trajectory of critical illness changes over time. This has implications regarding future study of patients' ICU memories and regarding patients' need for support in coping with such memories.
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| 6. |
- 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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| 7. |
- 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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| 8. |
- 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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| 9. |
- Nilsen, Per, et al.
(författare)
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Towards evidence-based palliative care in nursing homes in Sweden : a qualitative study informed by the organizational readiness to change theory
- 2018
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Ingår i: Implementation Science. - : BioMed Central. - 1748-5908. ; 13
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Tidskriftsartikel (refereegranskat)abstract
- Background: Sweden has a policy of supporting older people to live a normal life at home for as long as possible. Therefore, it is often the oldest, most frail people who move into nursing homes. Nursing home staff are expected to meet the existential needs of the residents, yet conversations about death and dying tend to cause emotional strain. This study explores organizational readiness to implement palliative care based on evidence-based guidelines in nursing homes in Sweden. The aim was to identify barriers and facilitators to implementing evidence-based palliative care in nursing homes. Methods: Interviews were carried out with 20 managers from 20 nursing homes in two municipalities who had participated along with staff members in seminars aimed at conveying knowledge and skills of relevance for providing evidence-based palliative care. Two managers responsible for all elderly care in each municipality were also interviewed. The questions were informed by the theory of Organizational Readiness for Change (ORC). ORC was also used as a framework to analyze the data by means of categorizing barriers and facilitators for implementing evidence-based palliative care. Results: Analysis of the data yielded ten factors (i.e., sub-categories) acting as facilitators and/or barriers. Four factors constituted barriers: the staff's beliefs in their capabilities to face dying residents, their attitudes to changes at work as well as the resources and time required. Five factors functioned as either facilitators or barriers because there was considerable variation with regard to the staff's competence and confidence, motivation, and attitudes to work in general, as well as the managers' plans and decisional latitude concerning efforts to develop evidence-based palliative care. Leadership was a facilitator to implementing evidence-based palliative care. Conclusions: There is a limited organizational readiness to develop evidence-based palliative care as a result of variation in the nursing home staff's change efficacy and change commitment as well as restrictions in many contextual conditions. There are considerable individual-and organizational-level challenges to achieving evidence-based palliative care in this setting. The educational intervention represents one of many steps towards developing a culture conducive to evidence-based nursing home palliative care.
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| 10. |
- Silén, Marit, et al.
(författare)
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Nurses' conceptions of decision making concerning life-sustaining treatment
- 2008
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Ingår i: Nursing Ethics. - London : Edward Arnold. - 0969-7330 .- 1477-0989. ; 15:2, s. 160-173
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe nurses' conceptions of decision making with regard to life-sustaining treatment for dialysis patients. Semistructured interviews were conducted with 13 nurses caring for such patients at three hospitals. The interview material was subjected to qualitative content analysis. The nurses saw decision making as being characterized by uncertainty and by lack of communication and collaboration among all concerned. They described different ways of handling decision making, as well as insufficiency of physician-nurse collaboration, lack of confidence in physicians, hindrances to patient participation, and ambivalence about the role of patients' next of kin. Future research should test models for facilitating communication and decision making so that decisions will emerge from collaboration of all concerned. Nurses' role in decision making also needs to be discussed.
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