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| 2. |
- Allemann, Hanna, et al.
(författare)
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Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure : Qualitative Study
- 2019
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Ingår i: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 21:7
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Tidskriftsartikel (refereegranskat)abstract
- Background: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them.Objective: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF.Methods: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis.Results: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future.Conclusions: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice.
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| 3. |
- Chung, Misook Lee, et al.
(författare)
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Perceived Control Prevents Perception of Negative Changes in Life as a Result of Caring for a Patient With Heart Failure
- 2021
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Ingår i: Journal of Cardiovascular Nursing. - : Wolters Kluwer. - 0889-4655 .- 1550-5049. ; 36:3, s. 206-211
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Family caregivers of patients with heart failure (HF) commonly experience emotional distress and caregiving burden. Despite their caregiving distress, caregivers may experience positive or negative changes in their life compared with before caregiving. Greater perceived control is associated with better health outcomes, but little is known about whether perceived control is related to caregivers' perceptions of positive or negative changes in life, independent of their distress and burden in providing care for patients with HF. The specific aims were to compare emotional distress and caregiving burden between caregivers who perceived positive versus negative changes in life due to caregiving and to examine whether perceived control predicts the perception of positive or negative changes in life while controlling for emotional distress and caregiving burden.METHODS: Primary caregivers of patients with HF (N = 140, 75% women) completed questionnaires about perceived positive or negative changes in life as a result of caregiving, perceived control, depressive symptoms, anxiety, and caregiving burden. Independent t test, χ2, and logistic regressions were used to accomplish specific aims.RESULTS: Compared with caregivers who reported positive changes in life (42%), caregivers who perceived negative changes in life (58%) had higher levels of depressive symptoms, anxiety, and caregiving burden. Lower level of perceived control was an independent predictor of perceived negative changes in life, controlling for age, gender, depressive symptoms, anxiety, and caregiving burden (odds ratio, 0.89; 95% confidence interval, 0.79-0.99; P = .0038).CONCLUSION: Greater perceived control played a protective role for caregivers independent of caregiver burden. Interventions designed to enhance perceived control may improve caregivers' perceptions of changes in their life.
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| 5. |
- Hedbom, Towe, et al.
(författare)
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Expectations of Tele-Yoga in Persons With Long-Term Illness : Qualitative Content Analysis
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
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Tidskriftsartikel (refereegranskat)abstract
- Background: Yoga is a mind-body exercise that has demonstrated its feasibility and safety even for individuals with severe long-term illness. Engaging in yoga has the potential to yield positive effects on both physical and mental well-being. Tele-yoga is a novel approach to rehabilitation in which participants practice group yoga with a live-streamed yoga instructor digitally via a tablet. This is especially beneficial for individuals who may find it difficult to leave their homes to participate in an exercise session. As part of our ongoing evaluation of the tele-yoga intervention in individuals with long-term illness, we have undertaken an exploration of participants' expectations regarding yoga in general and tele-yoga specifically. Understanding these expectations is crucial, as they can significantly impact their satisfaction with treatment and care and influence overall intervention outcomes.Objective: This study aims to explore the expectations of tele-yoga among individuals with long-term illness before starting a tele-yoga intervention.Methods: The study employed an inductive qualitative design and is part of a process evaluation within an ongoing randomized controlled trial. A total of 89 participants were interviewed before the start of the tele-yoga intervention. The interview guide encompassed questions about their general perceptions of yoga and the specific expectations they held for the upcoming tele-yoga sessions. The interviews were transcribed and analyzed using inductive qualitative content analysis.Results: Participants expressed their expectations for tele-yoga, focusing on the anticipated improvements in physical function and overall health. These expectations included hopes for reduced respiratory issues; relief from discomfort, aches, and pains; as well as increased physical flexibility, coordination, and overall well-being. Besides, they expected to achieve improved psychological well-being and performance; to acquire strategies to manage stress, anger, and anxiety; and to have their motivational drive strengthened and influence other activities. Participants described tele-yoga as a new and exciting technical solution that would facilitate the delivery of yoga. A few participants remained a little hesitant toward the use of technology, with some expectations based on previous experiences. When asked about expectations, some had no idea about what to expect. Participants also had varying perspectives on yoga, with some finding it mysterious and difficult to understand. Participants expressed thoughts that they found the idea of tele-yoga taking place in groups exciting and enjoyable. They also had expectations that being part of a group would provide opportunities for mutual inspiration and encouragement among the group members.Conclusions: Expectations before an intervention can provide valuable insights into understanding the factors influencing adherence to tele-yoga and its outcomes. Our findings provide a wide range of expectations for tele-yoga, spanning both physical and mental aspects. Moreover, the technology's potential to facilitate yoga delivery and the supportive nature of digital group interactions were evident from the results.
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| 6. |
- Klompstra, Leonie, et al.
(författare)
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A Clinical Tool (CUE-tool) for Health Care Professionals to Assess the Usability and Quality of the Content of Medical Information Websites : Electronic Delphi Study
- 2021
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 23:2
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: As patients are increasingly searching for information about their medical condition on the internet, there is a need for health professionals to be able to guide patients toward reliable and suitable information sources on the internet.OBJECTIVE: The aim of the study was to develop a clinical tool for health care professionals to assess the usability and quality of the content of websites containing medical information that could be recommended to patients.METHODS: A 3-round modified electronic Delphi (eDelphi) study was conducted with 20 health care professionals.RESULTS: In round one of the eDelphi study, of the 68 items initially created, 41 items (29 on usability and 12 on content) were rated as important or very important by more than half of the panel and thus selected for further evaluation in round two. In round two, of the 41 items chosen from round 1, 19 were selected (9 on usability and 10 on content) as important or very important by more than half of the panel for further evaluation. As a result of round three, 2 items were combined as a single item, leaving the instrument with 18 items in total (8 on usability and 10 on content). The tool is freely accessible online.CONCLUSIONS: The CUE-tool can be used to (1) evaluate the usability and reliability of the content of websites before recommending them to patients as a good information source; (2) identify websites that do not have reliable content or may be difficult for patients to use; (3) develop quality websites by using the criteria in the CUE-tool; and (4) identify different qualities between different websites.
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| 7. |
- Klompstra, Leonie, et al.
(författare)
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Experience of physical activity described by patients with heart failure who have received individualized exercise advice : A qualitative study
- 2021
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Ingår i: Journal of Rehabilitation Medicine. - : FOUNDATION REHABILITATION INFORMATION. - 1650-1977 .- 1651-2081. ; 53:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To describe the experience of physical activity in patients with heart failure who were randomized to a control group in which they received exercise advice and motivational support.Design: A qualitative descriptive interview study, using qualitative content analysis.Patients: Fifteen patients with heart failure.Methods: Interviews with members of the control group in a physical activity trial (Heart Failure-Wii study), who received exercise advice and telephone follow-ups.Results: The experience of physical activity was described by 4 categories: (1) affected by study participation; (ii) impact of having heart failure; (iii) mixed feelings when physically active; and (iv) influence of the social and physical environment. Study participation made patients feel encouraged or obliged, or they gained a sense of security in connection with becoming more physically active. Symptoms, side-effects and barriers could hamper their physical activity. They changed their type and level of physical activity, or used resources or equipment to become physically active. Patients experienced physical and emotional improvements and developed routines and structures, and their environment and caregivers were able to influence their physical activity.Conclusion: The role of study participation, having heart failure, and psychological and environmental factors describe the experiences of physical activity in patients with heart failure who were randomized to a control group, and are important in evaluating and motivating patients' physical activity.
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| 9. |
- Liljeroos, Maria, et al.
(författare)
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A qualitative study on the role of patient–nurse communication in acute cardiac care
- 2011
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Ingår i: Journal of Nursing Education and Practice. - : Sciedu Press. - 1925-4040 .- 1925-4059. ; 1:1, s. 17-24
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Tidskriftsartikel (refereegranskat)abstract
- Background: This study aimed to illuminate the meaning of the patient–nurse communication during a hospital stay as narrated by patients after a myocardial infarction (MI). Methods: Narrative interviews from 10 patients were analyzed, using a phenomenological-hermeneutic method. Results: The nursing dialogue meant a safe mooring point on the trajectory from initial chaos after a MI to a reoriented life. Nurses’ presence and availability for non-verbal and verbal communication created a trustful relationship where new knowledge was acquired and motivational strength for life-style changes was mobilized. A person-centered perspective was preferred, where relatives were invited into the conversation. Conclusions: These results highlight that patient–nurse communication based on the patient’s view is possible in acute care after MI, and is an issue of attitude rather than time. Trust lays the foundation for a person-centered communication and is developed through the nurse’s presence and availability not only in the emergency phase, but throughout hospitalization. Discussions focused on personal action plans with emphasis on the patient’s health assets may facilitate a successful rehabilitation.
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| 10. |
- 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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