| 1. |
- Ahlstedt Karlsson, Susanne, et al.
(author)
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An intervention mapping-based support program that empowers patients with endocrine therapy management
- 2022
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In: Evaluation and Program Planning. - : Elsevier BV. - 0149-7189. ; 92
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Journal article (peer-reviewed)abstract
- Background: For women diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is recommended. Patients experience diverse side effects, and difficulties in managing these side effects have been identified as obstacles for treatment continuation. The aim of this study was to describe the development of a support program for patients prescribed ET. Methods: Intervention mapping (IM) a comprehensive theory-based approach was used in the support program development. A participatory design was used and four advisory groups was formed including both patients and healthcare professionals. Results: This study employed the systematic stages of IM to develop a theory-based support program with the goal to empower patients prescribed ET to manage ETrelated symptoms and problems, and to illuminate the healthcare structure. The needs assessment identified three performance objectives: (1) Patients have knowledge of and understand their symptoms and their management strategies. (2) Patients have the knowledge and confidence to express their care needs and to ask for guidance from healthcare professionals. (3) Patients are active in and lead their healthcare process. Conclusion: This is a systematic developed model, built upon aspects of ET both from a patient´ perspective as well as from healthcare professionals’ perspectives.
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| 2. |
- Ahlstedt Karlsson, Susanne, et al.
(author)
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Experiences of endocrine therapy after breast cancer surgery
- 2019
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In: Annals of Oncology. Abstract Book of the 44th ESMO Congress (ESMO 2019) 27 September – 1 October 2019, Barcelona, Spain. Vol. 30, Suppl. 5, s. v840. - : Elsevier BV. - 0923-7534.
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Conference paper (peer-reviewed)abstract
- Background For patients diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is prescribed, which reduces recurrence and mortality rates (Early Breast Cancer Trialists’ Collaborative Group, 2011). Despite the prognostic benefits of ET, the adherence to treatment varies, and 30%–70% of the patients discontinue their treatment within five years (Daly et al., 2017; Tinari et al., 2015; Ursem et al., 2015), often during their first year of treatment (He et al., 2015), due to the fact that ET is associated with adverse side-effects (Regan et al., 2011). Methods The study was conducted in a surgical out-patient care unit at a hospital in Sweden. Inclusion criteria were women diagnosed with breast cancer and treated with ET after surgery. Forty-eight patients were invited to participate, of which 23 declined, thus 25 women were included. Seven focus group interviews, with two to five participants in each group, were conducted using an interview guide according to Krueger’s (2014) strategy. The interview guide contained six open-ended questions aiming to explore the women’s experiences of ET after breast cancer surgery. Inductive qualitative content analysis was used (Graneheim & Lundman, 2004). Results The analysis resulted in three categories that described the women’s experiences: the treatment “creates discomfort”; “promotes levels of management”; and “causes feelings of abandonment”. Women’s experiences of treatment could at first glance be seen as positive, as perceived protection, but after further analysis, a deeper meaning was identified: protection with reservation. When experiencing discomfort, the women were urged to manage the situation, although the mode of management sometimes varied. The women reported that they needed support, but when the support did not appear, they felt as though they had been abandoned. Moreover, knowledge about side-effects became an obstacle. The participants described feeling abandoned, but they also described their disease as “cancer light”. Conclusions Professionals need to explore the pre-knowledge and preconceptions that patients might have. This could be achieved by listening to the patient before providing them with information. The information needs to be customized specifically to each person. Funding Assar Gabrielsson’s Foundation, Herbert and Karin Jacobsson’s Foundation, and the Swedish Society of Nursing. Disclosure All authors have declared no conflicts of interest.
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| 3. |
- Ahlstedt Karlsson, Susanne, et al.
(author)
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“It is not just any pill”—Women’s experiences of endocrine therapy after breast cancer surgery
- 2019
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In: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 28:3
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Journal article (peer-reviewed)abstract
- Objective: For patients diagnosed with hormone-receptor-positive breast cancer, endocrine therapy (ET) is usually prescribed to reduce recurrence and mortality rates. Despite the benefits, compliance with treatment varies. The aim of this study was to provide qualitative data about women's experiences with ET after breast cancer surgery. Methods: Twenty-five women, treated with Tamoxifen after breast cancer surgery, were interviewed in seven focus groups. Six open-ended questions were used to explore their experiences. The interviews were recorded, transcribed verbatim and analysed using inductive content analysis. Results: The analysis resulted in three categories that described the women's experiences: the treatment “creates discomfort”; “promotes levels of management”; and “causes feelings of abandonment”. Women's experiences of treatment could at first glance be seen as positive, as perceived protection, but after further analysis, a deeper meaning was identified: protection with reservation. When experiencing discomfort, the women tried to manage the situation, although the mode of management sometimes varied. The women reported that they needed support, but when the support did not appear, they felt as though they had been abandoned. Moreover, knowledge about side effects became an obstacle, as it could create fear of more severe symptoms. They also described that their disease was perceived by healthcare professionals as “cancer light”. Conclusion: The information needs to be customised specifically to each person. © 2019 John Wiley & Sons Ltd
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| 4. |
- Ahlstedt Karlsson, Susanne, et al.
(author)
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Person-centred support programme (RESPECT intervention) for women with breast cancer treated with endocrine therapy: a feasibility study
- 2022
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In: Bmj Open. - : BMJ. - 2044-6055. ; 12:10
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Journal article (peer-reviewed)abstract
- Objective The peRson-cEntred Support Programme EndoCrine Therapy intervention is a complex intervention encompassing a person-centred support programme for patients with breast cancer being treated with endocrine therapy (ET). The aim of this study was to explore the feasibility of the trial design and patient acceptability of the intervention and outcome measures and to provide data to estimate the parameters required to design the final intervention. Design A controlled before-and-after design following the Consolidated Standards of Reporting Trials 2010 statement for feasibility trials. Setting A surgical outpatient clinic in Sweden. Participants Forty-one patients (aged 47-85) with breast cancer who were treated with ET. Interventions Eligible patients were assigned to the control group or intervention group, which included individual education material, an individualised learning plan and a personalised reminder letter using a person-centred approach. The intervention could be delivered as a telephone or digital follow-up during a 12-week follow-up. Outcome measures The aims were to determine the recruitment rate, assess the rate of retention, explore whether the intervention was delivered according to the protocol, assess the preferred form of educational support, rate of education sessions, length per education session and length between each education session, determine the distribution of education materials and assess completion rates of patient-reported instruments, including the General Self-efficacy Scale, the Quality of Care from the Patient's Perspective Questionnaire and the Memorial Symptom Assessment Scale. Results Eighty-six per cent of the patients in the intervention group completed the intervention and questionnaires 3 months after their inclusion. The call attendance was 90%. During the intervention, the contact nurse complied with the intervention protocol. For self-efficacy, symptoms and quality of care, there were no differences in effect size between the control and intervention groups. Conclusions This intervention seems to be feasible and acceptable among patients.
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| 5. |
- Ahlstedt Karlsson, Susanne, et al.
(author)
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Women’s coping strategies during the first three months of adjuvant endocrine therapy for breast cancer
- 2020
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In: Nursing Open. - : Wiley. - 2054-1058. ; 7:2, s. 605-612
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Journal article (peer-reviewed)abstract
- Abstract Aim: The aim was to explore stressful events, experienced problems and used coping strategies during the first three months of undergoing ET. Design: This study used a mixed method design. Methods: A consecutive sample of 39 women newly diagnosed with breast cancer were included at the start of their adjuvant endocrine therapy. A daily coping assessment was used to create daily reports about stressful events or experienced problems and coping strategies. Results: The most frequently reported physical problems were sleeping difficulties. Anxiety was the most reported emotional problem. Patients used both emotion-and problem-focused coping, and sleeping difficulties were coped by relaxing, and anxiety was coped by thinking about something else. Conclusions: Patients experienced a variety of stressful events or problems during the first three months of endocrine therapy. They also used several coping strategies to endure the treatment.
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| 6. |
- Björkman, Ida, et al.
(author)
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Person-centred care on the move : An interview study with programme directors in Swedish higher education
- 2022
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In: BMC Medical Education. - : Springer Science and Business Media LLC. - 1472-6920. ; 22:1
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Journal article (peer-reviewed)abstract
- BACKGROUND: There is an increasing trend towards person-centred care (PCC) worldwide, suggesting that PCC should be mastered by future health care professionals. This study aims to explore programme directors' views on facilitators and barriers to implementing PCC in four of the largest national study programmes in Sweden training future health care professionals.METHODS: A qualitative design was applied and interviews were conducted with 19 programme directors of Swedish national study programmes in medicine, nursing, occupational therapy and physiotherapy. The interviews were analysed using qualitative content analysis. Themes were sorted according to the Consolidated Framework for Implementation Research (CFIR) in an abductive approach. COREQ guidelines were applied.RESULTS: The overarching theme, as interpreted from the programme directors' experiences, was 'Person-centred care is on the move at different paces.' The theme relates to the domains identified by the CFIR as outer setting, innovation, inner setting and process. PCC was understood as something familiar but yet new, and the higher education institutions were in a state of understanding and adapting PCC to their own contexts. The movement in the outer setting consists of numerous stakeholders advocating for increased patient influence, which has stirred a movement in the inner setting where the higher educational institutions are trying to accommodate these new demands. Different meanings and values are ascribed to PCC, and the concept is thus also 'on the move', being adapted to traditions at each educational setting.CONCLUSION: Implementation of PCC in Swedish higher education is ongoing but fragmented and driven by individuals with a specific interest. There is uncertainty and ambiguity around the meaning and value of PCC and how to implement it. More knowledge is needed about the core of PCC as a subject for teaching and learning and also didactic strategies suitable to support students in becoming person-centred practitioners.
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| 7. |
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| 8. |
- Friberg, Febe, 1950, et al.
(author)
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Exploration of dynamics in a complex person-centred intervention process based on health professionals' perspectives
- 2018
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In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 18:1
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Journal article (peer-reviewed)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.
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| 9. |
- Friberg, Febe, 1950, et al.
(author)
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Qualitative Outcome analysis: a method for developing clinical interventions from qualitative results with examples of information processing in palliative cancer care
- 2010
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In: 6 th Nordic Interdisciplinary Conference on Qualiative Methods in the Service of Health, May 2-4, 2010.
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Conference paper (other academic/artistic)abstract
- Background: Recent decades have witnessed the development of qualitative methods as well as intense debate concerning the significance of methodological rigour. Although qualitative research has become an established part of health care, questions have been raised concerning how results can inform practice. Qualitative Outcome Analysis (QOA) is a method derived from qualitative research that allows interventions to be evaluated and that bridges the theory-practice gap on the path from knowledge generation to knowledge implementation. Aim: The aim is to describe Qualitative Outcome Analysis (QOA) by means of examples from an ongoing project about information processing in palliative cancer care and on the basis of our results from phenomenological and conversational analysis studies of person centred information in palliative care for patients with recurrent gastroenterological cancer. The participatory dimensions identified in the project will be related to QOA procedures. Methods: Focus groups with the palliative care team at an oncology outpatient unit were held, and major results from previous studies in the project were used as a framework or guide in order to facilitate discussion and reflection on the team’s professional experiences. In this way patient-reported qualitative findings were merged with professionals’ experience. Group discussion data were analyzed concurrently. A preliminary clinical intervention model was developed and refined by means of small scale clinical tests conducted by the team as well as other focus groups made up of different palliative care teams. Results: The applicability of QOA will be presented. A particular dimension identified in the process is participatory aspects related to the shared commitment between the researchers´ goal with the model and the team’s goal of facilitating clinical development. Such participatory aspects will be elaborated upon and related to the Participatory Action Research tradition. Discussion: The significance of relating QOA to Participatory Action Research will be reflected upon.
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| 10. |
- Fridberg, Helena, et al.
(author)
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Development and evaluation of the measurement properties of a generic questionnaire measuring patient perceptions of person-centred care
- 2020
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In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20:1
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Journal article (peer-reviewed)abstract
- Background Implementation of person-centred care (PCC) is a challenging undertaking. Thus, a call has been issued for a robust and generic instrument to measure and enable evaluation of PCC across settings and patient groups. This study aimed to develop a generic questionnaire measuring patients' perceptions of PCC. Further aims were to evaluate its content and measurement properties using a mixed-methods approach entailing Rasch and qualitative content analyses. Methods The study was conducted in three iterative phases. Phase one included six key informants to gain a broad view of the concept. Phase two entailed a Delphi study involving two rounds with eight experts who generated ratings on relevance, readability, comprehensiveness and suggestions for revision. Data were analysed using the Item Content Validity Index in conjunction with qualitative comments to improve the questionnaire. Phase three was performed using a mixed-methods design. Quantitative data were collected from patients (n = 553) responding to the questionnaire who were recruited from six in- and outpatient care units in a health care region in Sweden. Data was analysed using the Rasch measurement model. Qualitative data were based on the respondents' free-text comments, cognitive interviews (n = 10) and field notes, and then analysed with deductive content analysis. Results A questionnaire was developed and operationalised based on the information given by key informants in phase one and then validated for its content by experts in phase two. In phase three Rasch analyses revealed problems with targeting, thresholds and two misfitting items. These problems were corroborated by data from the qualitative analyses, which also revealed some issues of wording and interpretation of items. When thresholds were resolved and two items removed, the questionnaire met the assumptions of the Rasch model. Conclusions Experts gave the questionnaire content high ratings and it met measurement requirements assumed by the Rasch model after revisions. Those problems on targeting that remain need to be addressed in future studies. Meanwhile, we regard the questionnaire as of sufficient quality to be useful in benchmarking PCC.
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