| 1. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Nursing students' experiences of a pedagogical transition from campus learning to distance learning using digital tools.
- 2021
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Ingår i: BMC nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- The use of distance education using digital tools in higher education has increased over the last decade, particularly during the COVID-19 pandemic. Therefore, this study aimed to describe and evaluate nursing students' experiences of the pedagogical transition from traditional campus based learning to distance learning using digital tools.The nursing course Symptom and signs of illness underwent a transition from campus based education to distance learning using digital tools because of the COVID-19 pandemic. This pedagogical transition in teaching was evaluated using both quantitative and qualitative data analysis. Focus group interviews (n=9) were analysed using qualitative content analysis to explore students' experiences of the pedagogical transition and to construct a web-based questionnaire. The questionnaire comprised 14 items, including two open-ended questions. The questionnaire was delivered to all course participants and responses were obtained from 96 of 132 students (73%). Questionnaire data were analyzed using descriptive statistics and comments from the open-ended questions were used as quotes to highlight the quantitative data.The analysis of the focus group interviews extracted three main dimensions: didactic aspects of digital teaching, study environment, and students' own resources. Social interaction was an overall theme included in all three dimensions. Data from the questionnaire showed that a majority of students preferred campus based education and experienced deterioration in all investigated dimensions after the pedagogical transition. However, approximately one-third of the students appeared to prefer distance learning using digital tools.The main finding was that the pedagogical transition to distance education reduced the possibility for students' social interactions in their learning process. This negatively affected several aspects of their experience of distance learning using digital tools, such as reduced motivation. However, the heterogeneity in the responses suggested that a blended learning approach may offer pedagogical benefits while maintaining an advantageous level of social interaction.
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| 2. |
- Johansson, Birgitta, 1959-, et al.
(författare)
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The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial.
- 2024
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Ingår i: BMC cancer. - : BioMed Central (BMC). - 1471-2407. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only.In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance.If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing.ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).
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| 3. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Consolation in conjunction with incurable cancer.
- 2009
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Ingår i: Oncology Nursing Forum. - 0190-535X. ; 36:2
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE/OBJECTIVES: To increase knowledge of what patients with incurable cancer have found consoling during the course of the disease. DESIGN: Descriptive, cross-sectional analysis. SETTING: Hospice in western Sweden. SAMPLE: 10 patients (8 women, 2 men) aged 30-90 years. METHODS: Data were collected through semistructured interviews and analyzed with the constant comparative method of analysis. FINDINGS: Four categories emerged from the interview data: connection, self-control, affirmation, and acceptance. The core variable of the study was developed and defined as "being seen." To be seen and, therefore, consoled results from experiencing a sense of connection, self-control, affirmation, and acceptance. To be consoled is a step toward increased well-being. When patients feel their suffering is seen and understood by another person, they are filled with relief. CONCLUSIONS: Raising the issue of consolation and what consolation means to the patient is essential. Physical contact is not as important as mental presence. The act of listening is the most important factor when it comes to being seen, and what the nurse communicates is what defines the patient/nurse relationship. Nurses should be clear that they have the time and interest to deal with the patient. In addition, a nurse who is concerned with patients and has the courage to stay with them during difficult situations develops an attitude marked by presence, understanding, and commitment. Creativity, knowledge, and, most of all, courage are needed from the nurse as a caregiver to recognize the patient's need for consolation. Creativity and knowledge are needed to determine what point the patient has reached, and courage is needed to be present with the patient during difficult times. Results show that the caregiver, without having an established long-term relationship with the patient, can still bring consolation to the patient. IMPLICATIONS FOR NURSING: Creativity, knowledge, and courage are needed to comprehend and accept a patient's need for consolation. By using simple interventions, the nurse can console the patient with little effort. Words become less important when consolation is done through body language.
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| 4. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Development and initial psychometric evaluation of a radiotherapy-related symptom assessment tool, based on data from patients with brain tumours undergoing proton beam therapy
- 2021
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 35:3, s. 796-804
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Tidskriftsartikel (refereegranskat)abstract
- Background: Currently, no available tool easily and effectively measures both the frequency, intensity and distress of symptoms among patients receiving radiotherapy. A core symptom set (fatigue, insomnia, pain, appetite loss, cognitive problems, anxiety, nausea, depression, constipation, diarrhoea and skin reaction) has been identified and assessed across oncology research to better understand the pattern of symptoms and treatment side effects.Aim: The aim was to develop a tool measuring the multiple‐symptom experience in patients undergoing radiotherapy and evaluate its psychometric properties (validity, reliability and responsiveness).Design: This study has a prospective, longitudinal and quantitative design.Methods: We developed a patient‐reported outcome questionnaire, the Radiotherapy‐Related Symptoms Assessment Scale to assess the frequency, intensity and distress associated with symptoms. Patients (n = 175) with brain tumours undergoing proton beam therapy completed the Radiotherapy‐Related Symptoms Assessment Scale and the health‐related quality of life questionnaire (EORTC QLQ‐C30) during treatment. We assessed the validity, reliability and responsiveness of the Radiotherapy‐Related Symptoms Assessment Scale and evaluated the validity against QLQ‐C30.Results: There were significant questionnaire–questionnaire correlations regarding selected items, primarily fatigue, insomnia and pain, indicating satisfactory criterion‐related validity. The Radiotherapy‐Related Symptoms Assessment Scale had fair to good retest reliability.Conclusion: The Radiotherapy‐Related Symptoms Assessment Scale is a valid instrument for assessing symptom intensity and distress in patients with brain tumour undergoing PBT, with psychometric properties within the expected range. The Radiotherapy‐Related Symptoms Assessment Scale provides nurses with substantial information on symptom experience but requires little effort from the patient. Additional studies are required to further assess the psychometric properties in patients with different cancer diagnoses receiving conventional radiotherapy.
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| 5. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Evaluation of quality of care in relation to health-related quality of life of patients diagnosed with brain tumor : a novel clinic for proton beam therapy
- 2019
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Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 27:7, s. 2679-2691
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Patients with brain tumors constitute a vulnerable group, and it is important that they receive the highest quality of care (QoC). The study aim was to describe the perceptions of QoC and its association with health-related quality of life in brain tumor patients undergoing proton beam therapy in a newly established clinic.Method: Data were collected at the start of treatment and after 3 and 6weeks. Adult patients (18years old) with brain tumors (n=186) completed two self-administered questionnaires: a modified Quality from the Patients' Perspective, which measures perceived reality and subjective importance of care, and the EORTC QLQ-C30. Data were analyzed using parametric and non-parametric statistical tests.Results: The perceived QoC was highest for treatment information and lowest for dietician and smoking information, whereas interaction with doctors and nurses was rated as the most important aspect of quality of care. Subjective importance ratings were significantly higher than perceived reality ratings for 60% of items. A better global health was moderately correlated with a higher perceived support for fatigue.Conclusions: A need for quality improvement was identified for several aspects of patient care. Greater symptom distress during the treatment period led to greater perceived importance of symptom support. Ensuring QoC is complex and collaboration with other health care professionals is essential.Relevance to clinical practice: The clinic could improve QoC regarding information about possible symptoms, adjust care according to patient perceptions of importance, and involve patients in care decisions.
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| 6. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Health-related quality of life in patients with primary brain tumors during and three months after treatment with proton beam therapy
- 2021
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Ingår i: Technical Innovations & Patient Support in Radiation Oncology. - : Elsevier BV. - 2405-6324. ; 17, s. 5-17
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Tidskriftsartikel (refereegranskat)abstract
- Background Proton beam therapy (PBT) is increasingly administered to patients with primary brain tumors. Benefits of new treatments must be weighed against side effects and possible deterioration in health-related quality of life (HRQoL). The aim of this study was to describe and compare HRQoL, including acute symptom experiences and associated factors, in patients with malignant and benign brain tumors treated with PBT. Materials and Methods Adult PBT-treated patients with primary brain tumors (n=266) were studied. HRQoL was assessed with EORTC QLQ-C30, QLQ-BN20, HADS, ISI and MFI before, during and three months after treatment. Associations with demographic and medical factors were explored. Results Between baseline and three months post-treatment: HRQoL decreased significantly in the global health/QOL domains physical functioning, role functioning and cognitive functioning in the malignant group, global health/QOL and physical functioning decreased significantly in the benign group, more comorbidity was significantly associated with increased motor dysfunction, leg weakness, headache and future uncertainty. Fatigue and depression were the most frequent symptoms in both groups. Independent predictors of risk factor recognition were age, sex, chemotherapy, comorbidity and education level. Discussion Global health/QOL in patient with brain tumors is very complex and multidimensional. Symptoms are interrelated and related to patient, tumor and treatment factors. It is important to identify aspects of HRQoL that may be affected by treatment. These include both benefits, expected to improve HRQoL, and negative changes such as symptom experience and influencing factors. Evidence-based guidelines are needed for symptom management, and for high quality of care for patients experiencing low PBT-related HRQoL.
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| 7. |
- Langegård, Ulrica, 1969, et al.
(författare)
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Symptom Clusters in Patients With Brain Tumors Undergoing Proton Beam Therapy
- 2019
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Ingår i: Oncology Nursing Forum. - : Oncology Nursing Society. - 0190-535X .- 1538-0688. ; 46:3, s. 349-363
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To explore symptom clusters during proton beam therapy in patients with primary brain tumors and investigate associations among symptom clusters, demographic variables, and comorbidity in this patient population.SAMPLE & SETTING: Data were collected from 187 adult patients with primary brain tumors during their treatment periods in the Skandion Clinic in Uppsala, Sweden. Symptoms were assessed with the Radiotherapy-Related Symptoms Assessment Scale, and comorbidity was evaluated with the Self-Administered Comorbidity Questionnaire.METHODS & VARIABLES: The study used a quantitative and longitudinal design. Exploratory factor analysis was used to determine the underlying structure of symptom clusters.RESULTS: Three clusters were identified: mood, reduced appetite, and reduced energy. The mood cluster had the highest factor loadings (0.71-0.86). In addition, demographic and comorbidity characteristics were associated with symptom clusters in this group of patients.IMPLICATIONS FOR NURSING: Building knowledge about how these symptoms interact and are clustered will support healthcare professionals to more efficiently relieve symptom clusters during proton beam therapy.
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| 8. |
- Langegård, Ulrica, 1969, et al.
(författare)
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The Art of Living With Symptoms : A Qualitative Study Among Patients With Primary Brain Tumors Receiving Proton Beam Therapy
- 2020
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Ingår i: Cancer Nursing. - Philadelphia : LIPPINCOTT WILLIAMS & WILKINS. - 0162-220X .- 1538-9804. ; 43:2, s. E79-E86
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Tidskriftsartikel (refereegranskat)abstract
- Background: Symptom management in conjunction with proton beam therapy (PBT) from patient's perspective has not been explored. Such knowledge is essential to optimize the care in this relatively new treatment modality.Objective: The aim of this study was to explore the process of symptom management in patients with brain tumor receiving PBT.Methods: Participants were 22 patients with primary brain tumor who received PBT, recruited in collaboration with a national center for proton therapy and 2 oncology clinics at 2 university hospitals in Sweden. Interviews using open-ended questions were conducted before, during, and/or after treatment. Verbatim interview transcripts were analyzed using classic Grounded Theory.Results: "The art of living with symptoms" emerged as the core concept. This encompassed 3 interconnected symptom management concepts: "Adapting to limited ability," "Learning about oneself," and "Creating new routines." These concepts were summarized in a substantive theoretical model of symptom management. Despite the struggle to manage symptoms, participants lived a satisfactory life.Conclusions: Symptom management in conjunction with PBT comprises a process of action, thoughts, and emotions. The concepts that emerged indicated patients' symptom management strategies were based on their own resources.Implications for Practice: It is important that PBT facilities develop an approach that facilitates the symptom management process based on patients' experiences of symptoms, as well as their actions and available resources.
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| 9. |
- Langegård, Ulrica, 1969
(författare)
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The balancing act of living with symptoms. Patient-reported data and quality of care during and after treatment with proton beam therapy in patients with brain tumors
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- is thesis focuses on patients with primary brain tumors undergoing proton beam therapy (PBT) and the consequences of the treatment. Quality of care (QoC) in a recently established clinic in Sweden was also evaluated. Furthermore, this thesis describes the development of the first comprehensive, prospective health and care science research project assessing patient-reported data related to PBT. Study I - QoC in relation to health-related quality of life (HRQoL) was evaluated in patients with primary brain tumors given proton therapy. A need for quality improvement was identified for several aspects of care. More negative symptom experience during the treatment period led to greater perceived importance of specific support. Study II - Symptom clusters among patients with primary brain tumors given PBT were explored. ree clusters were identified: Mood, Reduced Appetite and Reduced Energy. Building knowledge about how these symptoms interact and are clustered can support healthcare professionals in more efficiently treating symp-toms during and after PBT. Study III - HRQoL, including acute side effects and associations between demographics and medical factors related to PBT, was investigated and compared with HRQoL related to conventional photon therapy (CRT). Global health/quality of life (QoL) deteriorated from baseline up to three months after treatment. e most pronounced symptom was fatigue. Study IV - Grounded theory (GT) was applied and The art of living with symptoms emerged as the core concept in this qualitative study. It encompassed three interconnected symptom management processes ex-pressed in the following concepts: Adapting to limited ability, Learning about oneself and Creating new rou-tines. ese concepts were summarized in a substantive theoretical model of symptom management. The studies underlying this thesis revealed that patients with primary brain tumors experienced increased symptoms during the treatment period, and that they decreased gradually up to three months after the end of treatment. Healthcare professionals must clarify patients’ needs for information and support related to symptoms and interventions and be aware that they change over time.
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| 10. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Evaluation of skin reactions during proton beam radiotherapy – Patient-reported versus clinician-reported
- 2021
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Ingår i: Technical Innovations and Patient Support in Radiation Oncology. - : Elsevier Ireland Ltd. - 2405-6324. ; 19, s. 11-17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Skin reaction is a common side-effect of radiotherapy and often only assessed as clinician-reported outcome (CRO). The aim was to examine and compare patient-reported outcome (PRO) of skin reactions with CRO for signs of acute skin reactions for patients with primary brain tumour receiving proton beam radiotherapy (PBT). A further aim was to explore patients’ experiences of the skin reactions. Methods: Acute skin reactions were assessed one week after start of treatment, mid-treatment and end of treatment among 253 patients with primary brain tumour who underwent PBT. PRO skin reactions were assessed with the RSAS and CRO according to the RTOG scale. Fleiss’ kappa was performed to measure the inter-rater agreement of the assessments of skin reactions. Results: The results showed a discrepancy between PRO and CRO acute skin reactions. Radiation dose was associated with increased skin reactions, but no correlations were seen for age, gender, education, occupation, other treatment or smoking. There was a poor agreement between patients and clinicians (κ = −0.016) one week after the start of PBT, poor (κ = −0.045) to (κ = 0.396) moderate agreement at mid treatment and poor (κ = −0.010) to (κ = 0.296) moderate agreement at end of treatment. Generally, patients’ symptom distress toward skin reactions was low at all time points. Conclusion: The poor agreement between PRO and CRO shows that the patient needs to be involved in assessments of skin reactions for a more complete understanding of skin reactions due to PBT. This may also improve patient experience regarding involvement in their own care. © 2021 The Author(s)
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| 11. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Managing an altered social context—Patients experiences of staying away from home while undergoing proton beam therapy
- 2020
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Ingår i: Nursing Open. - : Wiley-Blackwell Publishing Ltd. - 2054-1058. ; 7:4, s. 1157-1163
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To illuminate the experience of an altered social context for patients with primary brain tumours living away from home while undergoing proton beam therapy. Design: A descriptive, qualitative cross-sectional interview study. Methods: Nineteen patients were interviewed between December 2015–August 2016, either during (N = 7) or before and after (N = 12) their proton beam therapy. A hermeneutical analysis was performed. Results: Participants made adjustments to achieve control and well-being during the treatment period. The analysis also revealed two interrelated patterns that helped participants adjust: being part of the family from a distance and seeking affinity. Conclusion: It is important that patients receiving treatment far from home find a way to remain a part of their family and find affinity in the altered social context. Health professionals can prepare patients for the treatment period and can implement interventions to promote well-being for both patients and their relatives. © 2020 The Authors.
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| 12. |
- Ohlsson Nevo, Emma, 1960-, et al.
(författare)
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Patients' perspective in the context of proton beam therapy : summary of a Nordic workshop
- 2020
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 59:10, s. 1139-1144
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionOn 15–16 November 2019, the Skandion Clinic in Sweden hosted the first Nordic workshop on ‘Patients’ perspective in proton beam therapy’. The workshop was conducted to describe and compare the patient care in PBT clinics in the Nordic countries and to initiate a collaboration, with the target to ensure patient participation and reduce the risk of inequity of access by lowering the barriers for accepting PBT in a distant clinic. The overarching aim of this workshop was to describe and compare the use of patients’ perspectives in the Nordic PBT clinics.Material and MethodsTwelve participants attended the workshop, representing Denmark, Norway and Sweden. The participants were registered nurses working in patient care, researchers, physicist and leaders of the Skandion Clinic.ResultsThe consensus of the workshop was that systematic use of patient experiences on individual and group level is essential for developing clinical practice and understanding the overall effects of PBT. A difference in how the Nordic countries use patient experiences in clinical practise was found. The importance of lowering the barriers for participation in national proton trials and proton treatment were emphasized, however, there is a lack of knowledge about individual and organizational barriers to accepting PBT, and further research is therefore needed.ConclusionCollaboration between the Nordic countries regarding patients’ perspectives in the context of PBT is of importance to compare national differences as well as to find similarities, but most importantly to learn from each other and to improve patient care. Nordic collaboration with focus on systematic collection of patient-reported outcomes in the context of PBT is unique. Collaboration in research offers the possibility to increase the inclusion of patients’ perspectives in study protocols.
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| 13. |
- Sjövall, K., et al.
(författare)
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Evaluating patient reported outcomes and experiences in a novel proton beam clinic : challenges, activities, and outcomes of the ProtonCare project
- 2023
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Ingår i: BMC Cancer. - : Springer Nature. - 1471-2407. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The ProtonCare Study Group (PCSG) was formed with the purpose to develop and implement a framework for evaluation of proton beam therapy (PBT) and the related care at a novel clinic (Skandionkliniken), based on patient reported data.METHOD: A logic model framework was used to describe the process of development and implementation of a structured plan for evaluation of PBT for all diagnoses based on patient reported data. After the mission for the project was determined, meetings with networks and stakeholders were facilitated by PCSG to identify assumptions, resources, challenges, activities, outputs, outcomes, and outcome indicators. RESULT: This paper presents the challenges and accomplishments PCSG made so far. We describe required resources, activities, and accomplished results. The long-term outcomes that were outlined as a result of the process are two; 1) Improved knowledge about health outcomes of patients that are considered for PBT and 2) The findings will serve as a base for clinical decisions when patients are referred for PBT. CONCLUSION: Using the logical model framework proved useful in planning and managing the ProtonCare project. As a result, the work of PCSG has so far resulted in long-lasting outcomes that creates a base for future evaluation of patients' perspective in radiotherapy treatment in general and in PBT especially. Our experiences can be useful for other research groups facing similar challenges. Continuing research on patients´ perspective is a central part in ongoing and future research. Collaboration, cooperation, and coordination between research groups/networks from different disciplines are a significant part of the work aiming to determine the more precise role of PBT in future treatment options.
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| 14. |
- Sjövall, Katarina, et al.
(författare)
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To become part of the team-patient experiences of participating in decision-making for a new treatment (proton beam therapy)
- 2024
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Ingår i: Supportive Care in Cancer. - : Springer Nature. - 0941-4355 .- 1433-7339. ; 32:7
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim of this study was to explore patients' experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. BACKGROUND: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals' preferences. There is a knowledge gap of successful approaches to support patients' participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes.METHOD: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT.FINDINGS: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors' choice, and feeling selected for treatment.CONCLUSION: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients' preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients' voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide the right basis for the decision-making process.
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