| 1. |
- Carlsson, Eva, 1959, et al.
(författare)
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Structure and content in consultations with patients undergoing surgery for colorectal cancer
- 2013
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 17:6, s. 820-826
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To explore the structure and content of pre-planned consultations as part of the care and treatment of patients undergoing surgery for colorectal cancer. Methods: The study was based on 50 transcripts of audio-recorded pre-planned consultations between seven patients and 36 healthcare professionals from the time of diagnosis, pre-operative consultation, discharge consultation and pathology report in a colorectal unit. Results: The spread of consultation time between professions was considerable. Total mean consultation time for patients during the care process (7 consultations/patient) was 111 mm (range 83-191). The mean consultation time for surgeons was 18 min (7-40), anaesthesiologists 12 min (5-18) and nurses 14 min (5-49). Patients took up 40% of the word space, healthcare professionals used 59% and significant others 1%. Word space changed in such a way that the patient became more active towards the final consultation. Neither during the diagnosis consultation nor during the pre-operative consultation did the patients meet the operating surgeon. Six major subjects emerged: general health, diagnosis, surgical procedure, pre-operative preparations, recovery and treatment and follow-up. Conclusions: There is a need for clearer structure in the consultations. Most consultations lacked a clear introduction to the subject of the conversation. The study makes it possible to develop methods and structure for supporting conversations in which the patient is given space to help with the difficult issues present after undergoing surgery for colorectal cancer. The study also contributes to providing knowledge of how to organise surgical consultations in order to optimise person-centeredness, teamwork and clinical efficiency. (C) 2013 Elsevier Ltd. All rights reserved.
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| 2. |
- Ekman, Inger, 1952, et al.
(författare)
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Person-centered care -ready for prime time.
- 2011
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 10:4, s. 248-251
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Tidskriftsartikel (refereegranskat)abstract
- Long-term diseases are today the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. Person-centered care (PCC) has been shown to advance concordance between care provider and patient on treatment plans, improve health outcomes and increase patient satisfaction. Yet, despite these and other documented benefits, there are a variety of significant challenges to putting PCC into clinical practice. Although care providers today broadly acknowledge PCC to be an important part of care, in our experience we must establish routines that initiate, integrate, and safeguard PCC in daily clinical practice to ensure that PCC is systematically and consistently practiced, i.e. not just when we feel we have time for it. In this paper, we propose a few simple routines to facilitate and safeguard the transition to PCC. We believe that if conscientiously and systematically applied, they will help to make PCC the focus and mainstay of care in long-term illness.
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| 3. |
- Holm, Maja, et al.
(författare)
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Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers
- 2015
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 14
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
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| 4. |
- Lidén, Eva, 1955, et al.
(författare)
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Ways of talking about illness and prognosis in palliative cancer care consultations-two interactional frames
- 2010
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Ingår i: SUPPORTIVE CARE IN CANCER. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 18:4, s. 399-408
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of the study was to describe how interaction about changes in illness and prognosis was shaped by participants in outpatient palliative cancer care consultations. The data collection involved six video-recorded consultations at an outpatient oncology unit at a university hospital in Sweden. The interactions were studied by means of discourse analysis. Inclusion criteria for the patients were gastro-intestinal cancer and receiving palliative care. The sample included three men and three women, aged 54-70, with various metastasised gastro-intestinal tumours. Significant others (SOs) were included where patients brought one to the consultation. Three male consultants aged 55-59 participated. In palliative care consultations, the person-to-person and the patient-professional conversation frames were found to be in use as patients, SOs and physicians talked about the patients illness and prognosis. Within the patient-professional frame, three interactional patterns were found: the patient emphasising emotional experiences of illness or well-being and the physicians responding by toning down strategies, patients asking direct questions and getting straight answers and finally interaction marked by cautiousness and avoidances. Within the person-person frame, the interactions were described as: playful talk, collegial talk and existential talk. When patients shared their personal interpretations of illness and prognosis, their narrative was more enhanced by the person-to-person frame than the patient-professional frame. Finding out if and how patients and SOs want to express their worries and finding a balance between the interactional patterns that occur are ethical challenges which health professionals must face. Since patients and SOs may restrain their emotional experiences, investigating grounded ways of overcoming these difficulties is imperative.
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| 5. |
- Nilsson, Stefan, 1972, et al.
(författare)
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Evaluating pictorial support in person-centred care for children (PicPecc) : A protocol for a crossover design study
- 2021
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 11:5
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Tidskriftsartikel (refereegranskat)abstract
- Introduction This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysis Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and dissemination Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registration ClinicalTrials.gov; NCT04433650.
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| 6. |
- Nilsson, Stefan, 1972, et al.
(författare)
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Place of death among children from 0 to 17 years of age : A population-based study from Sweden
- 2024
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Ingår i: Acta Paediatrica. - : WILEY. - 0803-5253 .- 1651-2227.
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age.METHODS: We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors.RESULTS: Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%).CONCLUSION: Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.
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| 7. |
- Pettersson, Monica, 1963, et al.
(författare)
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Prepared for surgery : Communication in nurses preoperative consultations with patients undergoing surgery for colorectal cancer after a person-centred intervention
- 2018
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Ingår i: Journal of Clinical Nursing. - : Blackwell Publishing. - 0962-1067 .- 1365-2702. ; 27:13-14, s. 2904-2916
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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.
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| 8. |
- Pettersson, Monica, 1963, et al.
(författare)
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Topics and structure in preoperative nursing consultations with patients undergoing colorectal cancer surgery
- 2017
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 31:4, s. 674-686
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The preoperative education, which occurs in preoperative patient consultations, is an important part of the surgical nurse's profession. These consultations may be the building blocks of a partnership that facilitates communication between patient and nurse.AIM: The aim of the study was to describe topics and structure and documentation in preoperative nursing consultations with patients undergoing surgery for colorectal cancer.METHOD: The study was based on analysis of consultations between seven patients and nurses at a Swedish university hospital. The preplanned preoperative consultations were audio-recorded and transcribed verbatim. The structure of the consultations was described in terms of phases and the text was analysed according to a manifest content analysis RESULTS: The consultations were structured on an agenda that was used variously and communicating different topics in an equally varied manner. Seven main topics were found: Health status, Preparation before surgery, Discovery, Tumour, Operation, Symptoms and Recovery after surgery. The topic structure disclosed a high number of subtopics. The main topics 'Discovery', 'Tumour' and 'Symptoms' were only raised by patients and occupied only 11% of the discursive space. Documentation was sparse and included mainly task-oriented procedures rather than patients' worries and concerns.CONCLUSION: There was no clear structure regarding preoperative consultation purpose and content. Using closed questions instead of open is a hindrance of developing a dialogue and thus patient participation. Preoperative consultation practice needs to be strengthened to include explicit communication of the consultations' purpose and agenda, with nurses actively discussing and responding to patients' concerns and sensitive issues. The results of the study facilitate the development of methods and structure to support person-centred communication where the patient is given space to get help with the difficult issues he/she may have when undergoing surgery.
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| 9. |
- Wiljén, Angelica, et al.
(författare)
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The development of a mHealth tool for children with long-term illness to enable person-centred communication : a co-design approach
- 2021
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Ingår i: Quality of Life Research. - : SPRINGER. - 0962-9343 .- 1573-2649. ; 30:SUPPL 1, 1, SI
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Tidskriftsartikel (refereegranskat)abstract
- Background:Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication.Objective: The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents’ views and health care professionals’ expectations and requirements for an mHealth tool.Methods: User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique.Results:A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non–clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child’s voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea.Conclusions: The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.
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| 10. |
- Årestedt, Kristofer, 1968-, et al.
(författare)
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Symptom relief and palliative care during the last week of life among patients with heart failure : a national register study
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 21:3, s. 361-367
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.DESIGN: This is a national register study.SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
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