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1.
  • Klompstra, Leonie, 1982- (författare)
  • Physical activity in patients with heart failure : motivations, self-efficacy and the potential of exergaming
  • 2016
  • Doktorsavhandling (övrigt vetenskapligt)abstract
    • Background: Adherence to recommendations for physical activity is low in patients with heart failure (HF). It is essential to explore to what extent and why patients with HF are physically active. Self-efficacy and motivation for physical activity are important in becoming more physically active, but the role of self-efficacy in the relationship between motivation and physical activity in patients with HF is unknown. Alternative approaches to motivate and increase self-efficacy to exercise are needed. One of these alternatives might be using exergames (games to improve physical exercise). Therefore, it is important to obtain more knowledge on the potential of exergaming to increase physical activity.The overall aim was to describe the physical activity in patients with HF, with special focus on motivations and self-efficacy in physical activity, and to describe the potential of exergaming to improve exercise capacity.Methods: Study I (n = 154) and II (n = 101) in this thesis had a cross-sectional survey design. Study III (n = 32) was a 12-week pilot intervention study, including an exergame platform at home, with a pretest-posttest design. Study IV (n = 14) described the experiences of exergaming in patients who participated in the intervention group of a randomized controlled study in which they had access to an exergame platform at home.Results: In total, 34% of the patients with HF had a low level of physical activity, 46% had a moderate level, 23% reported a high level. Higher education, higher selfefficacy, and higher motivation were significantly associated with a higher amount of physical activity. Barriers to exercise were reported to be difficult to overcome and psychological motivations were the most important motivations to be physically active. Women had significantly higher total motivation to be physically active. Self-efficacy mediated the relationship between exercise motivation and physical activity; motivation leads to a higher self-efficacy towards physical activity.More than half of the patients significantly increased their exercise capacity after 12 weeks of using an exergame platform at home. Lower NYHA-class and shorter time since diagnosis were factors significantly related to the increase in exercise capacity. The mean time spent exergaming was 28 minutes per day. Having grandchildren and being male were related to more time spent exergaming.The analysis of the qualitative data resulted in three categories describing patients’ experience of exergaming: (i) making exergaming work, (ii) added value of exergaming, (iii) no appeal of exergaming.Conclusion: One-third of the patients with HF had a low level of physical activity in their daily life. Level of education, exercise self-efficacy, and motivation were important factors to take into account when advising patients with HF about physical activity. In addition to a high level of motivation to be physically active, it is important that patients with HF have a high degree of exercise self-efficacy.Exergaming has the potential to increase exercise capacity in patients with HF. The results also showed that this technology might be suitable for some patients while others may prefer other kinds of physical activity.
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2.
  • Liljeroos, Maria (författare)
  • Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
  • 2017
  • Doktorsavhandling (övrigt vetenskapligt)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.
  • Isaksson, Gunilla, et al. (författare)
  • Women's perception of changes in the social network after a spinal cord injury
  • 2005
  • Ingår i: Det sociala nätverkets betydelse för delaktighet i dagliga aktiviteter - Erfarenheter från kvinnor med ryggmärgsskada och deras män. - : Taylor & Francis. ; 27:17, s. 1013-1021
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: To describe how women with a spinal cord injury (SCI) perceived changes in the social network, and how these changes affected their ability to participate in occupation. METHOD: Thirteen women, aged 25 to 61 years, with a SCI were interviewed twice. The interviews focused on their ability to participate in occupation, their relations with individuals within the social network, and changes in the social network following the SCI. The analysis was carried out using qualitative content analysis. RESULTS: The women described an emotional need for social support after the SCI to participate in occupation. This was a new experience that required time to adapt to. The women also described a need for practical social support from the social network members to manage meaningful occupation. After the SCI, the women had developed new habits through close cooperation with members in the social network. The women felt that they had become more responsible for the development of their relations. Many relations had improved after the SCI, while some had decreased. The women had also developed new relations with other persons with disabilities. CONCLUSIONS: The women perceived substantial changes in the social network following the SCI, which in several ways affected their ability to participate in occupation. To adapt to their new life situation, the women gradually developed different strategies. The results point out the need to identify persons in the social network that women with SCI develop relations with, and integrate them in the rehabilitation process.
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4.
  • Harstäde, Carina Werkander, et al. (författare)
  • Dignity-conserving care actions in palliative care : an integrative review of Swedish research.
  • 2018
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 32:1, s. 8-23
  • Forskningsöversikt (refereegranskat)abstract
    • Background: Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self‐image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons’ dignity is a crucial challenge for professional nurses. The ‘Dignity Care Intervention’ addresses the multidimensionality of dignity by identifying patients’ dignity‐related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity.Methods: An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms ‘dignity’ and ‘palliative care’. Result sections of articles and theses were reviewed for dignity‐conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov's model of dignity.Results: Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision‐making. Additionally, nurses’ perceptiveness towards the patients was a core approach.Conclusion: The review offers culturally relevant suggestions on how to address specific dignity‐related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person‐centred palliative care that will conserve patients’ dignity.
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5.
  • Pestoff, Rebecka, et al. (författare)
  • Genetic counsellors in Sweden : their role and added value in the clinical setting.
  • 2016
  • Ingår i: European Journal of Human Genetics. - : Nature Publishing Group. - 1018-4813 .- 1476-5438. ; 24:3, s. 350-355
  • Tidskriftsartikel (refereegranskat)abstract
    • Genetic testing is becoming more commonplace in general and specialist health care and should always be accompanied by genetic counselling, according to Swedish law. Genetic counsellors are members of the multi-disciplinary team providing genetic counselling. This study examined the role and added value of genetic counsellors in Sweden, using a cross-sectional on-line survey. The findings showed that the genetic counsellors added value in the clinical setting by acting as the 'spider-in-the-web' regarding case management, having a more holistic, ethical and psychological perspective, being able to offer continuous support and build a relationship with the patient, and being more accessible than medical geneticists. The main difference between a genetic counsellor and medical geneticist was that the doctor had the main medical responsibility. Thus genetic counsellors in Sweden contribute substantially to the care of patients in the clinical genetic setting.
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6.
  • Ahlander, Britt-Marie, 1954-, et al. (författare)
  • Development and validation of a questionnaire evaluating patient anxiety during Magnetic Resonance Imaging : the Magnetic Resonance Imaging- Anxiety Questionnaire (MRI-AQ)
  • 2016
  • Ingår i: ; 72:6, s. 1368-1380
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim: To develop and validate a new instrument measuring patient anxiety during Magnetic Resonance Imaging examinations, Magnetic Resonance Imaging-Anxiety Questionnaire.Background: Questionnaires measuring patients’ anxiety during Magnetic Resonance Imaging examinations have been the same as used in a wide range of conditions. To learn about patients’ experience during examination and to evaluate interventions, a specific questionnaire measuring patient anxiety during Magnetic Resonance Imaging is needed.Design: Psychometric cross-sectional study with test-retest design.Methods: A new questionnaire, Magnetic Resonance Imaging-Anxiety Questionnaire, was designed from patient expressions of anxiety in Magnetic Resonance Imagingscanners. The sample was recruited between October 2012–October 2014. Factor structure was evaluated with exploratory factor analysis and internal consistency with Cronbach’s alpha. Criterion-related validity, known-group validity and test-retest was calculated.Results: Patients referred for Magnetic Resonance Imaging of either the spine or the heart, were invited to participate. The development and validation of Magnetic Resonance Imaging-Anxiety Questionnaire resulted in 15 items consisting of two factors. Cronbach’s alpha was found to be high. Magnetic Resonance Imaging-Anxiety Questionnaire correlated higher with instruments measuring anxiety than with depression scales. Known-group validity demonstrated a higher level of anxiety for patients undergoing Magnetic Resonance Imaging scan of the heart than for those examining the spine. Test-retest reliability demonstrated acceptable level for the scale.Conclusion: Magnetic Resonance Imaging-Anxiety Questionnaire bridges a gap among existing questionnaires, making it a simple and useful tool for measuring patient anxiety during Magnetic Resonance Imaging examinations.
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7.
  • Andersson, Sten-Ove, et al. (författare)
  • Doctors' and nurses' perceptions of military pre-hospital emergency care - When training becomes reality.
  • 2017
  • Ingår i: International Emergency Nursing. - : Elsevier. - 1755-599X .- 1878-013X. ; 32, s. 70-77
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of this study was to identify physicians' and nurses' perceptions of military pre-hospital emergency care before and after an international mission. A qualitative empirical study with a phenomenographic approach was used. The results after pre-deployment training can be categorised as (1) learning about military medicine and (2) taking care of the casualty. The results after an international mission can be categorised as (1) collaborating with others, (2) providing general health care and (3) improving competence in military medicine. These results indicate that the training should be developed in order to optimise pre-deployment training for physicians and nurses. This may result in increased safety for the provider of care, while at the same time minimising suffering and enhancing the possibility of survival of the injured.
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8.
  • Bylund Grenklo, Tove, et al. (författare)
  • Unresolved grief and its consequences : A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier
  • 2016
  • Ingår i: Supportive Care in Cancer. - 0941-4355 .- 1433-7339. ; 24:7, s. 3095-3103
  • Tidskriftsartikel (refereegranskat)abstract
    • PurposeThe early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.MethodsIn a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health. Results Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief. statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model. Conclusions Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.
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9.
  • Carlander (Goliath), Ida, 1968-, et al. (författare)
  • Being me and being us in a family living close to death at home
  • 2011
  • Ingår i: Qualitative Health Research. - : Sage Publications. - 1049-7323 .- 1552-7557. ; 21:5, s. 683-695
  • Tidskriftsartikel (refereegranskat)abstract
    • We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that everyone in the family individually had to deal with the impending death, regardless of whether he or she was the person with the life-threatening illness or not. This was linked to ways of promoting the own self-image, of “me-ness.” This pattern was present at the same time as the pattern of “being us,” in other words, being a family, and dealing with impending death and a new “we-ness,” as a group. “Striving for the optimal way of living close to death” was the core theme.
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10.
  • Carlsson, Maria, 1958- (författare)
  • The significance of fatigue in relatives of palliative patients
  • 2010
  • Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 8, s. 137-142
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: The aim of this study was to explore the significance of fatigue among relatives of palliative patients. Method: This pilot study has a descriptive and cross-sectional design and is the report of four open-ended questions focusing on the relatives' experiences of fatigue. The study population consisted of relatives of patients who were cared for in palliative care settings either at home or in an institution in Uppsala County during a specific day. Results: The relatives were very tired and identified worries, uncertainty, the patient's suffering, and many demands as the causes for the fatigue. The most obvious consequences of the tiredness were a lack of motivation, feelings of insufficiency and apathy, and putting their own interests aside. Many relatives expressed that having the company of close family members, taking exercise and spending time outdoors gave them strength to carry on. The health care system could make the situation easier for relatives of patients in palliative care by providing good care for the patient, and psychosocial support and respite care for the relatives. Significance of results: The result of the pilot study is only preliminary, but it showed that relatives caring for patients in a late palliative phase suffer from great fatigue and require more attention, both scientifically and in the clinical settings.
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