| 1. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
-
An intervention mapping-based support program that empowers patients with endocrine therapy management
- 2022
-
Ingår i: Evaluation and Program Planning. - : Elsevier BV. - 0149-7189. ; 92
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 2. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
-
Experiences of endocrine therapy after breast cancer surgery
- 2019
-
Ingår i: 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.
-
Konferensbidrag (refereegranskat)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.
|
|
| 3. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
-
“It is not just any pill”—Women’s experiences of endocrine therapy after breast cancer surgery
- 2019
-
Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 28:3
-
Tidskriftsartikel (refereegranskat)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
|
|
| 4. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
-
Person-centred support programme (RESPECT intervention) for women with breast cancer treated with endocrine therapy: a feasibility study
- 2022
-
Ingår i: Bmj Open. - : BMJ. - 2044-6055. ; 12:10
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 5. |
- Ahlstedt Karlsson, Susanne, et al.
(författare)
-
Women’s coping strategies during the first three months of adjuvant endocrine therapy for breast cancer
- 2020
-
Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 7:2, s. 605-612
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 6. |
- Björkman, Ida, et al.
(författare)
-
Person-centred care on the move : An interview study with programme directors in Swedish higher education
- 2022
-
Ingår i: BMC Medical Education. - : Springer Science and Business Media LLC. - 1472-6920. ; 22:1
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 7. |
|
|
| 8. |
- 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.
|
|
| 9. |
- Friberg, Febe, 1950, et al.
(författare)
-
Qualitative Outcome analysis: a method for developing clinical interventions from qualitative results with examples of information processing in palliative cancer care
- 2010
-
Ingår i: 6 th Nordic Interdisciplinary Conference on Qualiative Methods in the Service of Health, May 2-4, 2010.
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)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.
|
|
| 10. |
- Fridberg, Helena, et al.
(författare)
-
Development and evaluation of the measurement properties of a generic questionnaire measuring patient perceptions of person-centred care
- 2020
-
Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20:1
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 11. |
|
|
| 12. |
|
|
| 13. |
- Henriks, Göran, et al.
(författare)
-
Skapa en kultur med patienten som en aktiv partner
- 2015
-
Ingår i: Kvalitetsmässan 2015, 3-5 november 2015, Göteborg, Sverige..
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Utgångspunkten i personcentrerad vård är att utgå från att alla människor som arbetar inom vård och omsorg är kapabla att ta ansvar för sig själva och sitt arbete. Men hur styr man en verksamhet som drivs av berättelser, lyssnande, överenskommelser och dokumentationer? Är det styrning underifrån, ovanifrån eller genom partnerskap? Det är en utmaning att leda en verksamhet som involverar patienten som aktiv partner och en del av vårdteamet.
|
|
| 14. |
|
|
| 15. |
|
|
| 16. |
- Karlsson, Magdalena, et al.
(författare)
-
Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment : A life-world phenomenological study
- 2014
-
Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 13:28
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundMany people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.MethodsThis study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.ResultsThis study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.ConclusionsPeople diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
|
|
| 17. |
- Karlsson, Magdalena, et al.
(författare)
-
Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study
- 2014
-
Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 13
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. Methods: This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. Results: This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people's lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves - a new experience that lays the foundation for development of knowledge, personal learning and growth. Conclusions: People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
|
|
| 18. |
- Myrin Westesson, Linda, et al.
(författare)
-
A tortuous route to a capable fatherhood: the experience of being a father to a child with severe haemophilia
- 2015
-
Ingår i: Haemophilia. - : Wiley. - 1351-8216 .- 1365-2516. ; 21:6, s. 799-805
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: Haemophilia is a chronic illness that affects the whole family as the child’s reactions to the illness occur in interaction with the parents. Limited research has been conducted on how fathers of children with haemophilia experience their life situation. Aim: The aim of this study was to describe the lived experience of being a father to a child with severe haemophilia. Method: Individual, qualitative interviews were conducted with 14 fathers of 17 children with severe Haemophilia A. Data were analysed by means of a phenomenological hermeneutic method, including na€ıve reading, structural analysis and comprehensive interpretation. Results: The results revealed that the fathers gradually grew into fatherhood through a process that can be explained in the metaphor, ‘A tortuous road to a capable fatherhood’. The fathers experienced sorrow, powerlessness, concern and loss of a regular fatherhood after the child’s diagnosis. The loss of an envisaged fatherhood emerged as the greatest sorrow of being a father to a child with haemophilia. When home treatment with factor concentrates functioned without the involvement of Health Care Personal (HCP), the fathers’ sense of insufficiency decreased. Conclusion: A sense of being a capable father was associated with a sense of independence and control of one’s life situation. Support from the Haemophilia Treatment Centre (HTC) in the learning process is essential for both parents of a child with severe haemophilia. Awareness of the fathers’ struggle to feel capable is also vital while supporting the family in the first years after diagnosis.
|
|
| 19. |
- Myrin Westesson, Linda, et al.
(författare)
-
Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition
- 2019
-
Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 28:21-22, s. 4077-4086
-
Tidskriftsartikel (refereegranskat)abstract
- Aims and objectivesTo describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this.BackgroundParents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents.DesignA multicentre, cross-sectional study.MethodsCaregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5-point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process.ResultsGreater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self-infused, had another family member with haemophilia or if the parent had more children.ConclusionsParental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity.Relevance to clinical practiceMore psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists.
|
|
| 20. |
- Myrin Westesson, Lind, et al.
(författare)
-
Reaching Independence Through Forced Learning: Learning Processes and Illness Management in Parents of Children Affected by Hemophilia
- 2018
-
Ingår i: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 28:14
-
Tidskriftsartikel (refereegranskat)abstract
- Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents' learning processes and illness management in daily life during the first year after the start of their child's treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents' learning process and their experiences of the challenges during the first year after start of treatment. Incentives for learning were characterized by a longing to reach independence and regain control of one's life situation. The emerging key incentive for learning was a desire to become independent of health care professionals. Early home treatment reduced the impact of the illness, and by supporting parents in different ways during the learning process, health care professionals can promote the parents' trajectory toward independency.
|
|
| 21. |
- Pettersson, Monica, 1963, et al.
(författare)
-
Prepared for surgery : Communication in nurses preoperative consultations with patients undergoing surgery for colorectal cancer after a person-centred intervention
- 2018
-
Ingår i: Journal of Clinical Nursing. - : Blackwell Publishing. - 0962-1067 .- 1365-2702. ; 27:13-14, s. 2904-2916
-
Tidskriftsartikel (refereegranskat)abstract
- Aims and objectivesTo describe preoperative communication after a person‐centred intervention in nurses' consultations with patients undergoing surgery for colorectal cancer.BackgroundPatients all over the world scheduled for surgery are referred to preoperative consultations with healthcare professionals. The goal is to assess the risk of perioperative complications, improving quality of care and enabling patients to be prepared for surgery and recovery. A person‐centred intervention was developed, which consisted of an interactive written patient education material and person‐centred communication.DesignAn explorative quantitative and qualitative study based on 18 audio‐taped transcriptions.MethodsEighteen patients preoperative nursing consultations at three Swedish hospitals were analysed quantitatively regarding structure: words, time, phases, questions, discursive space, and qualitatively: topics and how the person‐centred communication appeared in the consultations.ResultsThe median time for consultations was 27 min (range 13–64 min). The nurses used two‐thirds of the discursive space in the consultations with the patients. The patient education material was used as a support to structure the consultation and discuss sensitive and difficult issues. Seven topics were discussed during the consultation. Two different approaches to communication were identified: Talking with the patient versus Talking to the patient. Talking with the patient (seen as person‐centred communication) was defined as: listening to the narrative and confirming each other, raising difficult topics, seeing each other as persons, building on strengths and resources, preparing for surgery and asking open questions.ConclusionWays of communicating influence how the preoperative consultation develops. Talking with the patient could be seen as person‐centred communication in the preoperative care, and when using this approach, the intervention purpose of person‐centred communication was met.Relevance to clinical practiceEducation in person‐centred communication is important for nurses to improve their skills in performing preoperative consultations.
|
|
| 22. |
- Rosengren, Kristina, et al.
(författare)
-
Development of an Academic Course in Person-Centred Care for Students in Higher Education: Teachers' Perspectives
- 2018
-
Ingår i: Education Research International. - : Hindawi Limited. - 2090-4002 .- 2090-4010.
-
Tidskriftsartikel (refereegranskat)abstract
- Few studies describe the development of academic courses with interprofessional perspectives. Therefore, the aim of this study was to describe teachers' experiences with developing an academic course in person-centred care (PCC). Data collection was divided into three parts: (1) written material/documentation describing the process (text and pictures, 16 meetings), (2) SWOT analysis in relation to being a lecturer (n = 7), and (3) interviews with the lecturers (n = 4). 'I he data were analysed using mixed methods, descriptive statistics (1) and qualitative content analysis (2-3). The results are presented in three categories (Co-creating a pilot course, Challenges of managing unfamiliar knowledge, and Wanting to understand new educational approach). This study highlights three challenges: (1) unfamiliarity with the field of person-centred care and selected educational activities and teaching skills; (2) unfamiliar colleagues, which delayed partnership efforts; and (3) limited experience working with other lecturers in light of the institute's structure and routines. However, these challenges served as both barriers and facilitators; the lecturers developed knowledge and experiences from collaborations (educational and/or content skills/knowledge) focusing on resources and skills.
|
|
| 23. |
- Smith, Frida, et al.
(författare)
-
Participatory design in education materials in a health care context
- 2017
-
Ingår i: Action Research. - : SAGE Publications. - 1476-7503 .- 1741-2617. ; 15:3, s. 310-336
-
Tidskriftsartikel (refereegranskat)abstract
- Written patient education material, for example, discharge-information is commonly used in hospital settings. Despite following guidelines on how to best present text and using patients as consultants, improvements can still be made from a patient’s perspective. Here, we describe the process of developing patient education material using a participatory design methodology, with patients, clinicians, researchers and designers working as co-designers following a structured process map. The method emphasises coping with conflicting interests and using this as a source of development. The philosophies behind action research and person-centred care were combined in a practical setting, enhancing both perspectives and generating actionable knowledge to be further used in patient involvement projects. The results reveal that predominant areas of tensions focused on power, organization, content and clinical usability. This study is one of the first to involve patients as co-designers of education materials in the health care context, and not only as consultants. Working as co-designers was found to be productive and in line with person-centred care philosophy, with focus on partnership and equality. The results of this study can therefore benefit both patients and other relevant stakeholders in the healthcare system in developing written patient education materials.
|
|
| 24. |
|
|
| 25. |
- Wallengren, Catarina, et al.
(författare)
-
Being a relative of a stroke survivor.
- 2008
-
Ingår i: The Fourth Pan-Pacific Nuring Conference. The Sixth Hong-Kong Nursing Symposium on Cancer Care. Managing Chronic Illness: Challenges and Opportunities for Nursing Practice and research, 13-15 November 2008. Hong Kong.
-
Konferensbidrag (refereegranskat)
|
|
| 26. |
|
|
| 27. |
|
|
| 28. |
- Wallengren, Catarina, et al.
(författare)
-
Relatives' information needs and the characteristics of their search for information - in the words of relatives of stroke survivors
- 2010
-
Ingår i: JOURNAL OF CLINICAL NURSING. - : Wiley-Blackwell Publishing Ltd.. - 0962-1067 .- 1365-2702. ; 19:19-20, s. 2888-2896
-
Tidskriftsartikel (refereegranskat)abstract
- Aim and objectives. To explore relatives’ information needs and the characteristics of their information-seeking process shortly after the stroke event and six months later. Background. Providing relatives of stroke survivors with information is important, as lack of information increases their uncertainty and risk becoming the ‘second patient in the family’ and early death. Therefore, it is essential to be aware of relatives’ information needs and information-seeking process the first six months after stroke. Design. This qualitative study has a descriptive design. Method. Open-ended interviews were conducted with sixteen relatives after stroke survivor’s admission to stroke unit and six months later with nine of these relatives. Data were analysed by means of content analysis. Results. The identified information needs covered the spectrum from stroke survivor’s medical condition because nurses’ actions to relatives’ changed health and life situation. Furthermore, relatives’ information-seeking process was found to be related to their level of personal involvement, situational circumstances, different forms of knowledge and sources of information. Conclusions. Relatives’ search for information emerges when health and lifestyle changes occur in survivors or themselves. It is important that this information affect them personally. Also, they need to develop different forms of knowledge when they cannot trust their own competences. As a result, instead of following established curricula based on their beliefs of relatives’ information needs, nurses need to practice on identifying relatives’ information needs. Relevance to practice. Different information needs and characteristics described in the study can serve as guidance in the development and implementation of pedagogical interventions to support relatives of stroke survivors. One pedagogical implication is to explore what a specific relative wants to know by how he/she talks or thinks about it. Thus, it must be taken into consideration that level of personal involvement, situational circumstances, sources of information and factual knowledge, understanding and skills are intertwined.
|
|
| 29. |
|
|
| 30. |
- Wallengren, Catarina, et al.
(författare)
-
The person-centred care game : A reflective tool for learning person-centred care in higher education
- 2023
-
Ingår i: MedEdPublish (2016). - 2312-7996. ; 13
-
Tidskriftsartikel (refereegranskat)abstract
- Person-centred care (PCC) is being implemented within many health care systems and educational institutions are important enablers of learning PCC. Teachers in higher education are responsible for helping students develop the ability to reflect. One approach is with serious games, which allow students to reflect on realistic situations and shape their skills with virtual patients. This paper describes the development of a serious game, the person-centred care game - (PCC game), which was designed to promote learning of PCC by reflection. We demonstrated how this PCC game could be used to induce PCC knowledge and skills by student reflection in an academic course on PCC.
|
|
| 31. |
|
|
| 32. |
|
|
| 33. |
- Wallengren Gustafsson, Catarina
(författare)
-
75 är det nya 20 - en åldrande befolkning är en global utmaning
- 2014
-
Ingår i: Almedalen 2014. ; 2 juli 2014
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Dagens samhällsmedborgare ställer högre krav än tidigare generationer på sitt boende, bemötande och att själva få vara delaktiga i att bestämma sin vardag, samtidigt som man är mer kapabel. Med modern teknik så finns även möjligheterna att framöver kunna göra mer själv hemifrån, inte minst inom vården, vilket kommer ställa andra krav på samhället. Seminariet inleds med en reflektion rörande åldrandet av Barbro Westerholm. Därefter presenterar seminariet både nya forskningsrön och framtidens teknik från akademi och industri. Sveriges inspel i den europeiska forskningssatsningen inom Horizon 2020 presenteras också. Avslutningsvis kommer tankar kring personcentrerad vård, ett nytt sätt att sätta personen i fokus i vården.
|
|
| 34. |
- Wallengren Gustafsson, Catarina, et al.
(författare)
-
Achieving The Highest Patient Satisfaction Through Efficient Care
- 2016
-
Ingår i: International Forum on Quality and Safety in Healthcare. 12-15 april 2016, Göeborg, Sverige..
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The Gothenburg University Centre for Person Centred Care (GPCC) is an interdisciplinary research centre performing evidence-based research, innovation, education and implementation. Person-centred care sees patients as persons with resources, and is based on a partnership between patients/carers and professional caregivers. Carried out in a consistent, structured way, it has proven to be highly efficient model of care. As well as being cost effective, patients experience a high level of satisfaction with their individually tailored care. After this session, participants will be able to: •Understand the methods, evidence and assumptions behind person-centred care, and understand how to implement and evaluate it.
|
|
| 35. |
- Wallengren Gustafsson, Catarina, et al.
(författare)
-
Challenges When Translating and Culturally Adapting a Measurement Instrument: The Suitability and Comprehensibility of Materials (SAM+CAM)
- 2018
-
Ingår i: Global Qualitative Nursing Research. - : SAGE Publications. - 2333-3936. ; 5
-
Tidskriftsartikel (refereegranskat)abstract
- There is evidence that low suitability and comprehensibility of printed education materials (PEMs) affects patients' and relatives' ability to read and comprehend information. However, few instruments measure the suitability of written information, and none exist in the Swedish language. The aim was to describe the translation and adaptation of the Suitability and Comprehensibility of Materials (SAM+CAM) instrument into the Swedish language and health care context and to explore challenges related to this process. The SAM+CAM instrument was translated and culturally adapted in five steps: forward translation, synthesis, back translation, expert review, and pretests. Differences were found when translating and culturally adapting the SAM+CAM instrument in the areas of semantic, idiomatic, and experiences. Participants revealed several clarity inconsistencies between items. They also identified linguistic differences and unfamiliar wording; they found that the instrument was perplexing to use and lacked knowledge regarding the specific health care areas in the examined PEMs. The cultural perspective is a significant factor that influences the usability of PEMs. Therefore, expert groups of participants are useful when adapting instruments to different cultures. The Swedish SAM+CAM instrument requires experienced and highly qualified raters.
|
|
| 36. |
- Wallengren Gustafsson, Catarina, 1968-
(författare)
-
De kan, de vill och de orkar, men... : Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter
- 2009
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall purpose of this thesis was to increase the understanding of relatives’ changing life situation during the first six months of a person’s onset of stroke, with focus on learning. Furthermore, the purpose was to evaluate theprinted education materials (PEM) targeted at relatives at Swedish stroke units. Method: In paper I, 16 relatives were interviewed about the meaning of becoming a relative of a person affected by stroke. In paper II, 9 relatives were reinterviewed about what it meant to be a relative of a person affected by stroke. The interviews took place six months after the stroke survivors’ onset of stroke. Data from the two studies were analyzed by Lindseth and Norberg’s hermeneutic phenomenological method of analysis, inspired by Ricoeur. In paper III, 16 and 9 relatives were interviewed about what they wanted to know and understand during the first six months after the onset of the survivors’ strokes. Krippendorff’s method of qualitative content analysis was used to analyse data. In paper IV, 42 PEM:s from 21 Swedish stroke units were examined. Data were analysed by use of descriptive statistics and Krippendorff’s method of qualitative content analysis. Results: Becoming the relative of a person affected by stroke means to experience chaos but also to reach a turning point. The turning point is the start of a febrile activity that shows the relatives’ willingness to seek order in the chaotic situation (I). Being the relative of a person affected by stroke also means to be in a struggle for freedom. Relatives do not want to adapt to the stroke or its consequences. Instead, they prefer to choose their own way of life and to write their own history. Therefore, they strive to integrate the stroke and its consequences to their everyday lives (II). The information that the relatives wished to have was about the stroke survivor, the professionals and themselves. Moreover, the results showed that the relatives’ information quest was related to personal involvement, contextual factors, different knowledge needs and different ways to obtain information (III). The PEM:s, offered at Swedish stroke units, were adequate in terms of quality of suitability and readability. The content of the printed education materials offered to relatives varies with the stroke units. Conclusion: To become a relative of a person affected by stroke means to end up in chaos, but also to reach a turning point (I). At this turning point the person is prepared to adjust arrange his/her life to the new conditions. Therefore, nurses need to learn to identify these turning points and include support for relatives in their changing life situation. Being a relative during the first six months of a survivor’s onset of stroke means to fight for freedom (II) without abandoning the stroke survivor. In this process, it is important that the relatives learn to balance freedom with responsibility and life and care for the survivor with relations to other relatives. Relatives are capable as they are active, committed and social persons (I, II, III). This is why alternative pedagogic methods and approached need to be developed and tested. Nurses need training in using such alternative methods. The content of the printed education materials offered to relatives at Swedish stroke units varies with the unit. As a result, it would be useful to establish a national electronic centre.
|
|
| 37. |
|
|
| 38. |
- Wallengren Gustafsson, Catarina, et al.
(författare)
-
Implementation of person-centered care - professional`s experiences
- 2015
-
Ingår i: The 23rd international conference on health promoting hospitals and health services. June 10-12, 2015 Oslo, Norway.
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Introduction This study describes the professionals’ experiences of person centered care after participating in an implementation program. The aim of the program was to secure person centered care. To secure a sustainable program, we plan and design it in partnership with leaders and employees. This means that they were the owners of the program while our roles were to facilitate its process. Purpose/Methods The data were collected by a self-reported survey of four questions and notes produced by participants during the program in four medical units at one University hospital in Sweden. Totally 83 assistant nurses, nurses and physicians answer the survey and 48 were selected to participate in a six month long program. The data was analyzed with content analysis. The research questions were; how is person-centered care described and how describe the professionals its effects? Results After participating in the program, the professionals describe patients more like partners who actively were involved in the care/treatment. The concept involvement was described with words like empowerment, partnership and co-actors. The effects are described as following; professionals now listen better and had improved their arrival calls, the statuses of the patients’ were also more valued and professionals said they collaborated better with other co-fellows, the qualities of care plans and recording had also increased and were conducted more systematically. Conclusions Based on the professionals’ experiences of participating in an implementation program, it seems that our professionals better can describe the actions that promote person-centeredness than how they understand person-centered care. Their new actions have helped them to further develop their approach of delivering person-centred care
|
|
| 39. |
|
|
| 40. |
- Wallengren Gustafsson, Catarina, et al.
(författare)
-
Person-centered care content in medicine, occupational therapy, nursing, and physiotherapy education programs
- 2022
-
Ingår i: BMC medical education. - : Springer Science and Business Media LLC. - 1472-6920. ; 22:1
-
Tidskriftsartikel (refereegranskat)abstract
- Although person-centered care (PCC) ensures high-quality care for patients, studies have shown that it is unevenly applied in clinical practice. The extent to which future health care providers are currently offered education in PCC at their universities is unclear. We aimed to clarify the PCC content offered to students as a basis for their understanding by exploring the PCC content of Swedish national study programs in medicine, nursing, occupational therapy, and physiotherapy.Using a qualitative document analysis design, we sampled the steering documents from all higher education institutions (n=48) with accreditation in medicine (n=7), nursing (n=25), occupational therapy (n=8), or physiotherapy (n=8) at a single time point. All national study programs (n=4), local program syllabuses (n=48), and local course syllabuses (n=799) were reviewed using a 10-item protocol.We found no content related to PCC in the steering documents at the national level. At the local level, however, signs of PCC were identified in local program syllabuses and local course syllabuses. Seven of the 48 local program syllabuses (15%) included PCC in their intended learning outcomes. Eight of the 799 local course syllabuses (1%) contained course titles that included the phrase 'person-centered care,' and another 101 listed 142 intended learning outcomes referring to PCC. A total of 21 terms connected to PCC were found, and the term 'person-centered care' was most commonly used in the nursing programs and least commonly in the medical programs.There is a broad range in how the national study programs in Sweden have incorporated PCC. The implementation has been driven by a bottom-up strategy. A deliberate and standardized strategy is needed to ensure full implementation of PCC into clinical curricula in higher education.
|
|
| 41. |
- Wallengren Gustafsson, Catarina, et al.
(författare)
-
Programöverskridande kurs i personcentrering
- 2015
-
Ingår i: högskolepedagogisk konferens i Göteborg (HKG 2015). 22 oktober 2015, Göteborg, Sverige.. ; 22 oktober, 2015
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Studier visar att om hälso-och sjukvården samt omsorgen utgår från personcentrerade grundantagande kan välbefinnandet såsom ökad trygghet, minskad smärtlindring och ökad tilltro till den egna förmågan öka hos patienterna samt att kost¬naderna för vården kan minskas. Denna evidensbaserade kunskap behöver nyttiggöras inom den högre utbildningen vid Sahlgrenska Akademin. Därför fattades beslut om att utveckla ett nytt utbildningsprogram som bidrar till att stödja lärande av personcentrerade grundantaganden. Detta utbildningsprogram har skapats tillsammans med programansvariga, lärare/lektorer och studenter från fyra program vid Sahlgrenska Akademin, PIL-enheten och Centrum för Personcentrerad Vård (GPCC). Utbildningsprogrammet riktar sig mot studenter från arbetsterapeut-, fysioterapeut-, läkar- och sjuksköterskeprogrammen. Grundantagandena i personfilosofi innebär att utgå från att människan är kapabel och ansvarstagande. Då pro¬grammet vilar på dessa grundantaganden har vi valt att tillämpa pedagogiska verktyg som flipped- och blended learning. Dessa verktyg ger stort utrymme för användning av studenternas egna resurser, erfarenheter, öppenhet och ansvarstagande. Utbildningsprogrammet har bedrivits i tre faser. Första fasen riktade sig till programansva¬riga vid de fyra programmen med syfte att förankra utbildningsprogrammets innehåll och pedagogik samt stödja projektets genomförande. Andra fasen innebar att lärare och stu¬denter från de fyra programmen tillsammans med projektledarna (utbildningsansvariga vid GPCC och lektor vid PIL-enheten) utvecklade lärande kring personcentrerad vård, flipped classroom, blended learning, kursplan (7,5 hp, avancerad nivå), annonsering, läruppgifter, examination och studiehandledning. Allt studiematerial i form av filmer, litteratur, ljudinspel¬ningar etc. skapades tillsammans och publicerades på lärplattformen GUL. Fas tre inled¬des med att 10 studenter från varje program (40 st) påbörjade kursen under våren 2015. De blev indelade i lärgrupper om 6-8 studenter och 2 mentorer. Tillsammans planerade lärgruppen studieplan, tidsplan och former för examination. I lärplattformen GUL hittar studenterna tips på litteratur (vetenskaplig och skönlitterär) och kortare filmer (från forskare, professionella, patienter) som kan stödja dem i deras lärande. Kursen pågår och avslutats under november 2015. Som projektledare har vi följande reflektioner till dags datum: Utmaningarna under fas 1 har bland annat rört förankringsarbetet med programansvariga. Utmaningarna under fas 2 har t.ex. handlat om lärarnas egenansvar att skaffa sig fördjupade kunskaper. Utmaningarna under fas 3 har i hög utsträckning rört tillämpning av nya pedagogiska metoder.
|
|
| 42. |
- Wallengren Gustafsson, Catarina
(författare)
-
Reaching the “turning-point” : on becoming a relative to a stroke survivor
- 2009
-
Konferensbidrag (refereegranskat)abstract
- Purpose: The purpose was to describe what it means to be a relative to a stroke survivor from the time of the stroke event and the first weeks on from a learning perspective. Background: Stroke is the third leading cause of death and disability in the western world. The lives of both patients and their relatives alter, which involves a pedagogical dimension. Few studies have explored first time affected relatives experiences of suddenly becoming a relative to a stroke survivor. Methods: Qualitative interviews with sixteen relatives were conducted. Data was analysed by means of a phenomenological hermeneutic method. Results: Two main themes “Being in chaos” and “Searching for order in chaos” with sub themes are described. The findings reveal that relatives reach a `turning point´ where they start their journey to restore order and stability of the chaotic life situation. Thus, it is of significance to identify the turning-point in order to help the relatives to enhance self care. Conclusions: Care givers need to pay more attention and be more sensitive to relatives in order to increase quality of life. There must an awareness regarding the learning potential in the “turning-point”. The care givers pedagogical preparedness is needed.
|
|
| 43. |
- Öhlén, Joakim, 1958, et al.
(författare)
-
Making Sense of Receiving Palliative Treatment: Its Significance to Palliative Cancer Care Communication and Information Provision.
- 2013
-
Ingår i: Cancer nursing. - : Wolters Kluwer. - 1538-9804 .- 0162-220X. ; 36:4, s. 265-273
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:: By receiving palliative treatment over time, a growing number of people with advanced gastrointestinal cancer are living longer. An image of palliative care, often existing in the public, as being exclusively for the dying could thus be particularly challenging in relation to patients' making sense of receiving palliative treatment over time. OBJECTIVE:: The aim was to interpret how patients diagnosed with advanced gastrointestinal cancer make sense of receiving palliative treatment. METHODS:: A phenomenological life-world approach was chosen. Seven men and 7 women with advanced gastrointestinal cancer receiving palliative treatment were followed up using repeated narrative interviews, which took place at a Swedish oncology clinic. In total, 66 interviews were conducted. The analysis followed hermeneutic principles and was interpreted stepwise. RESULTS:: Making sense was revealed as a phenomenon constructed narratively, through patients' searching for knowledge and understanding, approached by a dialectic pattern of living in wait and in the present, and finally, as a process of human learning through being and becoming, which transforms the experience and results in a changed personal experience. CONCLUSION:: Making sense of receiving palliative treatment is a process of human learning at the end of life, characterized by an ongoing search for knowledge and understanding. To enhance patients' sense making in this context, professionals need to go beyond "providing information." IMPLICATIONS FOR PRACTICE:: The attention of health professionals must be directed at recognizing and enhancing patients' ways of seeking knowledge to help them make sense of receiving palliative treatment. Person-centered activities need to be developed.
|
|
| 44. |
- Öhlén, Joakim, 1958, et al.
(författare)
-
Preparedness for colorectal cancer surgery and recovery through a person-centred information and communication intervention - A quasi-experimental longitudinal design.
- 2019
-
Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 14:12
-
Tidskriftsartikel (refereegranskat)abstract
- To meet patients' information and communication needs over time in order to improve their recovery is particularly challenging for patients undergoing cancer surgery. The aim of the study was to evaluate whether an intervention with a person-centred approach to information and communication for patients diagnosed with colorectal cancer undergoing surgery can improve the patients' preparedness for surgery, discharge and recovery during six months following diagnosis and initial treatment. The intervention components involving a novel written interactive patient education material and person-centred communication was based on critical analysis of conventional information and communication for these patients. During 2014-2016, 488 consecutive patients undergoing elective surgery for colorectal cancer were enrolled in a quasi-experimental longitudinal study. In three hospitals, first a conventional care group (n = 250) was recruited, then the intervention was introduced, and finally the intervention group was recruited (n = 238). Patients' trajectories of preparedness for surgery and recovery (Preparedness for Colorectal Cancer Surgery Questionnaire-PCSQ) health related quality of life (EORTC QLQ-C30) and distress (NCCS Distress Thermometer) were evaluated based on self-reported data at five time points, from pre-surgery to 6 months. Length of hospital stay and patients' behavior in seeking health care pre- and post-surgery were extracted from patient records. Longitudinal structural equation models were used to test the hypothesized effects over time. Statistically significant positive effects were detected for two of the four PCSQ domains (patients searching for and making use of information, and making sense of the recovery) and for the role functioning domain of the EORTC QLQ-C30. Patients in the intervention group were also more likely to contact their assigned cancer "contact nurse" (a.k.a. nurse navigator) instead of contacting a nurse on duty at the ward or visiting the emergency department. In conclusion, the overall hypothesis was not confirmed. Further research is recommended on written and oral support tools to facilitate person-centred communication.
|
|
