| 1. |
|
|
| 2. |
- Brynskog, Ellen, et al.
(författare)
-
Altered prerequisites: A cross-sectional survey regarding cancer care in Sweden during COVID-19 from the viewpoint of contact nurses in cancer care
- 2022
-
Ingår i: Nordic Journal of Nursing Research. - : SAGE Publications. - 2057-1585 .- 2057-1593. ; In Press
-
Tidskriftsartikel (refereegranskat)abstract
- Contact nurses in cancer care were vital in sustaining cancer care in Sweden during the COVID-19 pandemic. The aim of this study was to investigate their experiences of providing care to people with cancer in these exceptional circumstances to identify emerging challenges and opportunities that must be addressed moving forward. A survey distributed to contact nurses was supplemented with questions regarding the pandemic. The study design was a cross-sectional survey, analyzed with descriptive statistics and content analysis, reported in accordance with STROBE. Almost half of respondents (n = 337) reported not being able to provide the same support as before the pandemic. Analysis of open-ended question responses (n = 232) revealed a main theme: Altered prerequisites for providing care. Three categories related to altered interaction, accessibility, and nursing reality were revealed. Thorough reflection is needed to make use of lessons learned and avoid sustaining the short-term solutions needed to cope with the acute phase of the pandemic.
|
|
| 3. |
- Friberg, Febe, 1950, et al.
(författare)
-
Exploration of dynamics in a complex person-centred intervention process based on health professionals' perspectives
- 2018
-
Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 18:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: The assessment and evaluation of practical and sustainable development of health care has become a major focus of investigation in health services research. A key challenge for researchers as well as decision-makers in health care is to understand mechanisms influencing how complex interventions work and become embedded in practice, which is significant for both evaluation and later implementation. In this study, we explored nurses' and surgeons' perspectives on performing and participating in a complex multi-centre person-centred intervention process that aimed to support patients diagnosed with colorectal cancer to feel prepared for surgery, discharge and recovery. Method: Data consisted of retrospective interviews with 20 professionals after the intervention, supplemented with prospective conversational data and field notes from workshops and follow-up meetings (n = 51). The data were analysed to construct patterns in line with interpretive description. Results: Although the participants highly valued components of the intervention, the results reveal influencing mechanisms underlying the functioning of the intervention, including multiple objectives, unclear mandates and competing professional logics. The results also reveal variations in processing the intervention focused on differences in using and talking about intervention components. Conclusions: The study indicates there are significant areas of ambiguity in understanding how theory-based complex clinical interventions work and in how interventions are socially constructed and co-created by professionals' experiences, assumptions about own professional practice, contextual conditions and the researchers' intentions. This process evaluation reveals insights into reasons for success or failure and contextual aspects associated with variations in outcomes. Thus, there is a need for further interpretive inquiry, and not only descriptive studies, of the multifaceted characters of complex clinical interventions and how the intervention components are actually shaped in constantly shifting contexts.
|
|
| 4. |
- Fristedt, Sofi, 1969-, et al.
(författare)
-
Digi-Do: a digital information tool to support patients with breast cancer before, during, and after start of radiotherapy treatment: an RCT study protocol
- 2021
-
Ingår i: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 21:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Radiation Therapy (RT) is a common treatment after breast cancer surgery and a complex process using high energy X-rays to eradicate cancer cells, important in reducing the risk of local recurrence. The high-tech environment and unfamiliar nature of RT can affect the patient's experience of the treatment. Misconceptions or lack of knowledge about RT processes can increase levels of anxiety and enhance feelings of being unprepared at the beginning of treatment. Moreover, the waiting time is often quite long. The primary aim of this study will be to evaluate whether a digital information tool with VR-technology and preparatory information can decrease distress as well as enhance the self-efficacy and health literacy of patients affected by breast cancer before, during, and after RT. A secondary aim will be to explore whether the digital information tool increase patient flow while maintaining or increasing the quality of care. Method: The study is a prospective and longitudinal RCT study with an Action Research participatory design approach including mixed-methods data collection, i.e., standardised instruments, qualitative interviews (face-to-face and telephone) with a phenomenological hermeneutical approach, diaries, observations, and time measurements, and scheduled to take place from autumn 2020 to spring 2022. The intervention group (n=80), will receive standard care and information (oral and written) and the digital information tool; and the control group (n=80), will receive standard care and information (oral and written). Study recruitment and randomisation will be completed at two centres in the west of Sweden. Discussion: Research in this area is scarce and, to our knowledge, only few previous studies examine VR as a tool for increasing preparedness for patients with breast cancer about to undergo RT that also includes follow-ups six months after completed treatment. The participatory approach and design will safeguard the possibilities to capture the patient perspective throughout the development process, and the RCT design supports high research quality. Digitalisation brings new possibilities to provide safe, person-centred information that also displays a realistic picture of RT treatment and its contexts. The planned study will generate generalisable knowledge of relevance in similar health care contexts.Trial registration: ClinicalTrials.gov Identifier: NCT04394325. Registered May 19, 2020. Prospectively registered.
|
|
| 5. |
- Gremyr, Ida, 1975, et al.
(författare)
-
Exploring power shifts as an enabler for a strengthened patient role in quality improvements: A Swedish survey study
- 2021
-
Ingår i: BMJ open quality. - : BMJ. - 2399-6641. ; 10:1
-
Forskningsöversikt (refereegranskat)abstract
- Objectives This study examined the relationship between professionals' perceptions of a strengthened role for the patient and of patient involvement in quality improvement (QI) and whether professionals' experiences in improvement science were a moderator on such a relationship. Design From a predominantly close-ended, 44-item questionnaire, 4 questions specifically concerning professionals′ perception on patient involvement in QI were analysed. Setting Three Swedish regions. Participants 155 healthcare professionals who had previously participated in courses in improvement science. Results The covariate patient involvement was significantly related to a perceived strengthened patient role. There was also a significant interaction effect between degree of patient involvement and professionals' experience in the area of improvement science on a strengthened patient role. The result shows that there is a relationship between the perceived level of patient involvement in improvements and professionals' perceptions of a strengthened patient role. In this study, the covariate, perceived patient involvement, was significantly related to experiences of more equal relationships between patients and healthcare professionals. There was also a significant interaction effect between the degree of patient involvement and professionals' experience in the area of improvement science, for a more equal relationship between patients and healthcare professionals. Conclusion Increased patient involvement in QI is a means of strengthening the patient role and supporting a more equal relation between patients and healthcare professionals. Furthermore, empirical evidence shows that the healthcare professionals' experiences in the area of improvement science support a strengthened patient role and a more equal power relationship, but for this to happen, the mindset of professionals is key. Future research is needed to capture and investigate the experiences from patients and relatives about being involved in QI in healthcare, and to study the effects on quality in care processes.
|
|
| 6. |
- Gremyr, Ida, 1975, et al.
(författare)
-
Exploring the phase for highest impact on radicality: a cross-sectional study of patient involvement in quality improvement in Swedish healthcare
- 2018
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055 .- 2044-6055. ; 8:11, s. e021958-
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives Involving patients in quality improvement is often suggested as a critical step for improving healthcare processes. However, this comes with challenges related to resources, tokenism, validity and competence. Therefore, to optimise the use of available resources, there is a need to understand at what stage in the improvement cycle patient involvement is most beneficial. Thus, the purpose of this study was to identify the phase of an improvement cycle in which patient involvement had the highest impact on radicality of improvement. Design An exploratory cross-sectional survey was used. Setting and methods A questionnaire was completed by 155 Swedish healthcare professionals (response rate 34%) who had trained and had experience in patient involvement in quality improvement. Based on their replies, the impact of patient involvement on radicality in various phases of the improvement cycle was modelled using the partial least squares method. Results Patient involvement in quality improvement might help to identify and realise innovative solutions; however, there is variation in the impact of patient involvement on perceived radicality depending on the phase in which patients become involved. The highest impact on radicality was observed in the phases of capture experiences and taking action, while a moderate impact was observed in the evaluate phase. The lowest impact was observed in the identify and prioritise phase. Conclusions Involving patients in improvement projects can enhance the quality of care and help to identify radically new ways of delivering care. This study shows that it is possible to suggest at what point in an improvement cycle patient involvement has the highest impact, which will enable more efficient use of the resources available for patient involvement.
|
|
| 7. |
|
|
| 8. |
- Grynne, A., et al.
(författare)
-
Integrating perspectives of patients, healthcare professionals, system developers and academics in the co-design of a digital information tool
- 2021
-
Ingår i: Plos One. - : Public Library of Science (PLoS). - 1932-6203. ; 16:7
-
Tidskriftsartikel (refereegranskat)abstract
- Background Patients diagnosed with cancer who are due to commence radiotherapy, often, despite the provision of a considerable amount of information, report a range of unmet information needs about the treatment process. Factors such as inadequate provision of information, or the stressful situation of having to deal with information about unfamiliar things, may influence the patient's ability to comprehend the information. There is a need to further advance the format in which such information is presented. The composition of information should be tailored according to the patient's individual needs and style of learning. Method and findings The PD methodology is frequently used when a technology designed artefact is the desired result of the process. This research is descriptive of its kind and provides a transparent description of the co-design process used to develop an innovative digital information tool employing PD methodology where several stakeholders participated as co-designers. Involving different stakeholders in the process in line with recommended PD activities enabled us to develop a digital information tool that has the potential to be relevant and user-friendly for the ultimate consumer. Conclusions Facilitating collaboration, structured PD activities can help researchers, healthcare professionals and patients to co-design patient information that meets the end users' needs. Furthermore, it can enhance the rigor of the process, ensure the relevance of the information, and finally have a potential to employ a positive effect on the reach of the related digital information tool.
|
|
| 9. |
- Grynne, A., et al.
(författare)
-
Women's experience of the health information process involving a digital information tool before commencing radiation therapy for breast cancer : a deductive interview study
- 2023
-
Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Individuals undergoing radiation therapy for breast cancer frequently request information before, throughout and after the treatment as a means to reduce distress. Nevertheless, the provision of information to meet individuals needs from their level of health literacy is often overlooked. Thus, individuals information needs are often unmet, leading to reports of discontent. Internet and digital information technology has significantly augmented the available information and changed the way in which persons accesses and comprehends information. As health information is no longer explicitly obtained from healthcare professionals, it is essential to examine the sequences of the health information process in general, and in relation to health literacy. This paper reports on qualitative interviews, targeting women diagnosed with breast cancer who were given access to a health information technology tool, Digi-Do, before commencing radiation therapy, during, and after treatment. METHODS: A qualitative research design, inspired by the integrated health literacy model, was chosen to enable critical reflection by the participating women. Semi-structured interviews were conducted with 15 women with access to a digital information tool, named Digi-Do, in addition to receiving standard information (oral and written) before commencing radiation therapy, during, and after treatment. A deductive thematic analysis process was conducted. RESULTS: The results demonstrate how knowledge, competence, and motivation influence women's experience of the health information process. Three main themes were found: Meeting interactive and personal needs by engaging with health information; Critical recognition of sources of information; and Capability to communicate comprehended health information. The findings reflect the women's experience of the four competencies: to access, understand, appraise, and apply, essential elements of the health information process. CONCLUSIONS: We can conclude that there is a need for tailored digital information tools, such as the Digi-Do, to enable iterative access and use of reliable health information before, during and after the radiation therapy process. The Digi-Do can be seen as a valuable complement to the interpersonal communication with health care professionals, facilitating a better understanding, and enabling iterative access and use of reliable health information before, during and after the radiotherapy treatment. This enhances a sense of preparedness before treatment starts.
|
|
| 10. |
|
|
| 11. |
|
|
| 12. |
- Kassebaum, Nicholas J., et al.
(författare)
-
Global, regional, and national disability-adjusted life-years (DALYs) for 315 diseases and injuries and healthy life expectancy (HALE), 1990-2015 : a systematic analysis for the Global Burden of Disease Study 2015
- 2016
-
Ingår i: The Lancet. - 0140-6736 .- 1474-547X. ; 388:10053, s. 1603-1658
-
Tidskriftsartikel (refereegranskat)abstract
- Background Healthy life expectancy (HALE) and disability-adjusted life-years (DALYs) provide summary measures of health across geographies and time that can inform assessments of epidemiological patterns and health system performance, help to prioritise investments in research and development, and monitor progress toward the Sustainable Development Goals (SDGs). We aimed to provide updated HALE and DALYs for geographies worldwide and evaluate how disease burden changes with development. Methods We used results from the Global Burden of Diseases, Injuries, and Risk Factors Study 2015 (GBD 2015) for all-cause mortality, cause-specific mortality, and non-fatal disease burden to derive HALE and DALYs by sex for 195 countries and territories from 1990 to 2015. We calculated DALYs by summing years of life lost (YLLs) and years of life lived with disability (YLDs) for each geography, age group, sex, and year. We estimated HALE using the Sullivan method, which draws from age-specific death rates and YLDs per capita. We then assessed how observed levels of DALYs and HALE differed from expected trends calculated with the Socio-demographic Index (SDI), a composite indicator constructed from measures of income per capita, average years of schooling, and total fertility rate. Findings Total global DALYs remained largely unchanged from 1990 to 2015, with decreases in communicable, neonatal, maternal, and nutritional (Group 1) disease DALYs off set by increased DALYs due to non-communicable diseases (NCDs). Much of this epidemiological transition was caused by changes in population growth and ageing, but it was accelerated by widespread improvements in SDI that also correlated strongly with the increasing importance of NCDs. Both total DALYs and age-standardised DALY rates due to most Group 1 causes significantly decreased by 2015, and although total burden climbed for the majority of NCDs, age-standardised DALY rates due to NCDs declined. Nonetheless, age-standardised DALY rates due to several high-burden NCDs (including osteoarthritis, drug use disorders, depression, diabetes, congenital birth defects, and skin, oral, and sense organ diseases) either increased or remained unchanged, leading to increases in their relative ranking in many geographies. From 2005 to 2015, HALE at birth increased by an average of 2.9 years (95% uncertainty interval 2.9-3.0) for men and 3.5 years (3.4-3.7) for women, while HALE at age 65 years improved by 0.85 years (0.78-0.92) and 1.2 years (1.1-1.3), respectively. Rising SDI was associated with consistently higher HALE and a somewhat smaller proportion of life spent with functional health loss; however, rising SDI was related to increases in total disability. Many countries and territories in central America and eastern sub-Saharan Africa had increasingly lower rates of disease burden than expected given their SDI. At the same time, a subset of geographies recorded a growing gap between observed and expected levels of DALYs, a trend driven mainly by rising burden due to war, interpersonal violence, and various NCDs. Interpretation Health is improving globally, but this means more populations are spending more time with functional health loss, an absolute expansion of morbidity. The proportion of life spent in ill health decreases somewhat with increasing SDI, a relative compression of morbidity, which supports continued efforts to elevate personal income, improve education, and limit fertility. Our analysis of DALYs and HALE and their relationship to SDI represents a robust framework on which to benchmark geography-specific health performance and SDG progress. Country-specific drivers of disease burden, particularly for causes with higher-than-expected DALYs, should inform financial and research investments, prevention efforts, health policies, and health system improvement initiatives for all countries along the development continuum.
|
|
| 13. |
|
|
| 14. |
- Smith, Frida, 1973, et al.
(författare)
-
Digital in-home training before breath-adapted radiotherapy
- 2022
-
Ingår i: Annals of Oncology. - : Elsevier BV. - 1569-8041 .- 0923-7534. ; 33:Supplement 7, s. S1355-S1355
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Deep Inspiration Breath Hold (DIBH) technology is increasingly used with radiation therapy to protect healthy organs from unwanted absorbed dose. Using deep breaths, this technique creates as larger distance between the heart and the chest wall. DIBH has shown good results, but requires a well-prepared, involved patient who has learned the correct breathing technique so that optimal position and breathing patterns can be reproduced during each treatment session. There is no evidence regarding which type of inhalation is optimal or how to best train this. However, a person-centered model for DIBH training has been developed in co-design with relevant stakeholders, and this will be integrated into a digital information and instruction tool enabling training undertaken at home. The purpose of this project is to describe and evaluate a person-centered model to train the most optimal breathing technique for breath-adapted postoperative radiotherapy of women affected by left-sided breast cancer.
|
|
| 15. |
- Smith, Frida, 1973, et al.
(författare)
-
Evaluating the implementation and use of the regional cancer plan in Western Sweden through concept mapping
- 2019
-
Ingår i: International Journal for Quality in Health Care. - : Oxford University Press (OUP). - 1464-3677 .- 1353-4505. ; 31:7, s. G44-G52
-
Tidskriftsartikel (refereegranskat)abstract
- Quality problem or issue: Within healthcare, policy documents are often used to strategically standardize, streamline or change how general health issues are managed for a specific patient group or treatment. Despite significant effort in developing policy and strategic planning documents, these may not have the intended impact and their value has long been questioned by practitioners. Choice of solution: To identify barriers and affordances for the implementation and use of a strategic plan for cancer care in the Western Sweden Healthcare Region, we used Concept Mapping; a participatory mixed method approach to inquiry consisting of both qualitative and quantitative tasks intended to elicit and integrate the diverse perspectives of multiple stakeholders. Implementation: The study was carried out between April and October 2017 and consisted of several sequential data collection steps: idea generation, sorting and rating ideas for importance and feasibility. Stakeholders from different levels and professions in cancercare participated, but the number varied in the separate steps of data collection: idea generation (n = 112), sorting (n = 16) and rating (n = 38). Evaluation: A concept map visualized seven areas that stakeholders throughout the cancer-care process considered necessary to address in order to enable the implementation of the plan. Skills provision was considered the most important cluster but also rated as least feasible. A consistent theme emerged that information, or lack thereof, might be a barrier for the plan being put into action to a greater extent in the cancer-care units. Nine actionable ideas rated highly on both importance and feasibility were presented as a go-zone. Lessons learned: Our results suggest that efforts might be better spent on ensuring information about and accessibility to strategic documents throughout the organization, rather than frequently updating them or producing new ones. Having sufficient skills provision seems to be the prerequisite for successful implementation.
|
|
| 16. |
- Smith, Frida, 1973, et al.
(författare)
-
Exploring the meaning, role and experiences of a patient-led social innovation for people affected by cancer: a new collaborative care model complementing traditional cancer rehabilitation in Sweden
- 2021
-
Ingår i: BMJ open quality. - : BMJ. - 2399-6641. ; 10:4
-
Tidskriftsartikel (refereegranskat)abstract
- Objective Kraftens Hus is the first support centre in Sweden designed by and for people affected by cancer, including patients, family, friends, staff members and local community representatives (collectively 'stakeholders'). The purpose of this study was to explore the meaning, role and experiences of Kraftens Hus stakeholders using a patient and public involved methodology. Methods To understand and map the experiences of visitors to Kraftens Hus, we applied concept mapping (CM), a mixed methods approach where data are collected and analysed in four structured steps designed to capture the diverse perspectives of multiple stakeholders. Qualitative interviews with relevant stakeholders supplemented the CM findings. Results The final concept map contained six clusters of ideas. Within the clusters, there was a recurring theme that cancer-affected people value accessible and long-term psychosocial support (PSS). The intended emotional, social and practical needs identified in a previous design process seem to have been addressed and appreciated by Kraftens Hus visitors. Conclusion Kraftens Hus is an example of a new patient-led social innovation based on a life-event perspective and integration of resources from different sectors in society. By focusing on life, not the disease, the care continuum expands, and long-term PSS is provided alongside cancer treatment. The evaluation confirms that PSS should focus on health and well-being in the broadest sense.
|
|
| 17. |
- Smith, Frida, 1973, et al.
(författare)
-
Fourteen years of quality improvement education in healthcare: a utilisation-focused evaluation using concept mapping
- 2019
-
Ingår i: BMJ open quality. - : BMJ. - 2399-6641. ; 8:4, s. e000795-
-
Tidskriftsartikel (refereegranskat)abstract
- Background: The need for training in quality improvement for healthcare staff is well acknowledged, but long-term outcomes of such training are hard to evaluate. Behaviour change, improved organisational performance and results are sought for, but these variables are complex, multifactorial and difficult to assess. Aim: The purpose of this article is to explore the personal and organisational outcomes identified by participants over 14 years of university-led QI courses for healthcare professionals. Method: Inspired by the Kirkpatrick model for evaluation, we used concept mapping, a structured mixed method that allows for richness of data to be captured and visualised by inviting stakeholders throughout the process. In total, 331 previous course participants were included in the study by responding to two prompts, and 19 stakeholders taking part in the analysis process by doing the sorting. Result: Two maps, one for personal outcomes and one for organisational outcomes, show clusters of the responses from previous course participants and how the outcomes relate to each other in meta-clusters. Both maps show possible long-term outcomes described by the previous course participants. Conclusion: The results of this study indicate that it is possible that training in quality improvement with a strong experiential pedagogical approach fosters a long-term improvement capability for the course participants and, even more important, a long-term improvement capability (and increased improvement skill) in their respective organisations.
|
|
| 18. |
- Smith, Frida, 1973, et al.
(författare)
-
Readability, suitability and comprehensibility in patient education materials for Swedish patients with colorectal cancer undergoing elective surgery: a mixed method design
- 2014
-
Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 94:2, s. 202-209
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: To characterize education materials provided to patients undergoing colorectal cancer surgery to gain a better understanding of how to design readable, suitable, comprehensible materials. Method: Mixed method design. Deductive quantitative analysis using a validated suitability and comprehensibility assessment instrument (SAM. +. CAM) was applied to patient education materials from 27 Swedish hospitals, supplemented by language technology analysis and deductive and inductive analysis of data from focus groups involving 15 former patients. Results: Of 125 patient education materials used during the colorectal cancer surgery process, 13.6% were rated 'not suitable', 76.8% 'adequate' and 9.6% 'superior'. Professionally developed stoma care brochures were rated 'superior' and 44% of discharge brochures were 'not suitable'. Language technology analysis showed that up to 29% of materials were difficult to comprehend. Focus group analysis revealed additional areas that needed to be included in patient education materials: general and personal care, personal implications, internet, significant others, accessibility to healthcare, usability, trustworthiness and patient support groups. Conclusion: Most of the patient education materials were rated 'adequate' but did not meet the information needs of patients entirely. Discharge brochures particularly require improvement. Practice implications: Using patients' knowledge and integrating manual and automated methods could result in more appropriate patient education materials.
|
|
| 19. |
- Ventura, F., et al.
(författare)
-
Beyond effectiveness evaluation: Contributing to the discussion on complexity of digital health interventions with examples from cancer care
- 2022
-
Ingår i: Frontiers in Public Health. - : Frontiers Media SA. - 2296-2565. ; 10
-
Tidskriftsartikel (refereegranskat)abstract
- Digital health interventions (DHIs) have become essential complementary solutions in health care to enhance support and communication at a distance, with evidence of improving patient outcomes. Improving clinical outcomes is a major determinant of success in any health intervention, influencing its funding, development, adoption and implementation in real-world practice. In this article we explore our experiences of developing and testing DHIs to identify and discuss complexity challenges along their intervention research lifecycle. Informed by the case study research approach, we selected three individual DHIs aimed at satisfying the supportive and educational needs of people living with cancer. The Care Expert, the Digi-Do and the Gatapp were underpinned on different complexity frameworks i.e., the Medical Research Council framework and the Non-adoption, Abandonment, Scale-up, Spread and Sustainability framework. This variance on the methodological underpinning was expected to prompt a multifaceted discussion on the complexity dimensions endorsed by each of the frameworks. Our discussion endorses the adoption of mixed-methods research designs, to gather the perspectives of stakeholders and end-users, as well as pragmatic evaluation approaches that value effectiveness outcomes as much as process outcomes. Furthermore, the dissemination and sustainability agenda of DHIs needs to be considered from early-stage development with the inclusion of a business model. This business plan should be worked in partnership with healthcare services, regulatory bodies and industry, aiming to assure the management of the DHI throughout time.
|
|
