| 21. |
- Kirvalidze, Mariam, et al.
(författare)
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Effectiveness of integrated person-centered interventions for older people's care: Review of Swedish experiences and experts’ perspective
- 2024
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Ingår i: Journal of Internal Medicine. - : John Wiley & Sons. - 1365-2796 .- 0954-6820. ; 295:6, s. 804-824
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Tidskriftsartikel (refereegranskat)abstract
- Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers’ scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.
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| 22. |
- 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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| 23. |
- Pauli Bock, Emelie, et al.
(författare)
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Literature Review : Evidence-Based Health Outcomes and Perceptions of the Built Environment in Pediatric Hospital Facilities.
- 2021
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Ingår i: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 61, s. e42-e50
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Tidskriftsartikel (refereegranskat)abstract
- PROBLEM: The current knowledge of evidence-based design for adults is not always implemented when hospital buildings are designed. Scientific data are sparse on the effects of hospital design in pediatric settings on health outcomes in children, parents, and staff. The objective of this review is to determine the evidence-based impact of the built environment in pediatric hospital facilities on health outcomes in children, parents, and staff.ELIGIBILITY CRITERIA: A systematic literature review was carried out on the electronic databases Cochrane Library, Embase, Medline and CINAHL from the period of 2008 to 2019. The review considered studies using either quantitative, qualitative, or mixed methodologies.SAMPLE: Out of 1414 reviewed articles the result is based on eight included articles.RESULTS: Two of these eight articles included health outcomes. The other six articles presented results on measures of perceptions and/or satisfaction for children, parents or staff with the built environment when transitioning to a new or renovated facility. These were generally higher for the new compared to the old facility.CONCLUSIONS: Given the small number of studies addressing the question posed in this review, no firm conclusions can be drawn.IMPLICATIONS: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.
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| 24. |
- Klompstra, Leonie, 1982-
(författare)
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Physical activity in patients with heart failure : motivations, self-efficacy and the potential of exergaming
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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| 25. |
- Svanberg, Mikael, 1958-, et al.
(författare)
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Impact of emotional distress and pain-related fear on patients with chronic pain : Subgroup analysis of patients referred to multimodal rehabilitation
- 2017
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Ingår i: Journal of Rehabilitation Medicine. - : Foundation for Rehabilitation Information. - 1650-1977 .- 1651-2081. ; 49:4, s. 354-361
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Multimodal rehabilitation programmes (MMRP) for chronic pain could be improved by determining which patients do not benefit fully. General distress and pain-related fear may explain variations in the treatment effects of MMRP.Design: Cohort study with a cross-sectional, prospective part.Patients: Chronic musculoskeletal pain patients referred to 2 hospital-based pain rehabilitation clinics.Methods: The cross-sectional part of this study cluster analyses patients (n = 1,218) with regard to distress and pain-related fear at first consultation in clinical pain rehabilitation and describes differences in external variables between clusters. The prospective part follows the subsample of patients (n = 260) participating in MMRP and describes outcome post-treatment.Results: Four distinct subgroups were found: (i) those with low levels of distress and pain-related fear; (ii) those with high levels of pain-related fear; (iii) those with high levels of distress; and (iv) those with high levels of distress and pain-related fear. These subgroups showed differences in demographics, pain characteristics, quality of life, and acceptance, as well as the degree of MMRP participation and MMRP outcome.Conclusion: Among patients with chronic pain referred to MMRP there are subgroups with different profiles of distress and pain-related fear, which are relevant to understanding the adaptation to pain and MMRP outcome. This knowledge may help us to select patients and tailor treatment for better results.
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| 26. |
- Jalmsell, Li, et al.
(författare)
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On the child's own initiative : parents communicate with their dying child about death
- 2015
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Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 39:2, s. 111-117
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Tidskriftsartikel (refereegranskat)abstract
- Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about deathwith their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.
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| 27. |
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| 28. |
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| 29. |
- Beernaert, Kim, et al.
(författare)
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Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents : A Population-Based Survey Study
- 2017
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Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 35:27, s. 3136-3142
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Tidskriftsartikel (refereegranskat)abstract
- Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children's distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons' and daughters' distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire-9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.
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| 30. |
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