Patients' health and quality of life after complex endovascular aortic repair: A prospective cohort study.

RATIONALE: Complex endovascular aortic repair often involves multiple major procedures over time with a high risk of complications and little time for recovery. This exposes patients to great stress, both physically and mentally, with potentially long-lasting effects. There is limited knowledge about these effects and who is most at risk - information on this could help vascular nurses and other healthcare professionals anticipate and meet care needs. AIM: To investigate the health and quality of life effects of complex endovascular aortic repair, in relation to patients' demographic and health characteristics. DESIGN: A prospective cohort study. METHODS: Patients undergoing elective complex endovascular aortic repair were consecutively recruited from one university hospital during one year (n=25). Self-report questionnaires on health disability (WHODAS 2.0), quality of life (WHOQoL-BREF) and symptoms of anxiety and depression (HADS) were filled out preoperatively and repeated one and six months postoperatively. Prospective changes in health and quality of life, and associations with patient demographics and preoperative health characteristics, were assessed. Ethical approval was obtained prior to study performance. RESULTS: Overall, patients had significantly greater health disability at one month (WHODAS 2.0 score median 31.5, range 1.1-63.0) than preoperatively (median 13.6, range 0.0-41.3) (n=22, p=.017); the majority had recovered at six months (median 11.4, range 3.3-58.7) (n=18, p=.042). No significant effects were seen in quality of life and symptoms of anxiety and depression (p>.05). However, the participants showed heterogeneity, with certain individuals not recovered at six months (n=8). Factors associated with worse six-month outcomes were being female, age < 70 years, postoperative complications, and history of anxiety or depression. CONCLUSIONS: Complex endovascular aortic repair have limited long-term negative effects on patients' health and quality of life. However, some patients are not recovered at six months postoperatively, which could be explained by individual characteristics. To improve recovery outcomes, vascular nurses and other health care professionals should be aware of the possible recovery trajectories and factors associated with impaired recovery, and use them to anticipate and meet the patients' individual care needs.

Patient complaints about communication in cancer care settings: Hidden between the lines.

OBJECTIVES: To investigate patient complaints in cancer care settings reported to patient advisory committees (PACs) and describe the frequency and content of communication failures across all reports. METHODS: Content analysis, with a summative approach, was applied to cancer care complaints (2016-2020) by 692 patients to PACs in one Swedish healthcare region. RESULTS: More than half the patients reported communication failures. Patients reported not receiving proper information, not being listened to, and being treated disrespectfully or impersonally. Communication failures occurred in different stages of the patients' cancer care, from diagnostic workup to end-of-life. Compared with the results of the PACs, communication failures were underreported, and were often combined with complaints in other categories. CONCLUSIONS: Communication failures are hidden "between the lines" and do not appear clearly in existing reporting systems. Healthcare must utilize the knowledge conveyed by patient complaints and create conditions and environments that support healthcare providers in delivering person-centered care. PRACTICE IMPLICATION: A summary picture of patients' complaints in Swedish cancer care is provided. These results could be used to further improve the patient complaint system. Above all, the results could serve as a "wake-up call" about the importance of communication and a valuable resource in improving cancer care.

Testing a model for person-centred pain management: A systematic review and synthesis guided by the Fundamentals of Care framework.

AIMS: To test a model for person-centred pain management using qualitative evidence in the literature and refine it based on the results. DESIGN: A qualitative systematic review with thematic synthesis using the Fundamentals of Care framework. METHODS AND DATA SOURCES: A literature search in February 2021 in six scientific databases: CINAHL, PsycInfo, Pubmed, Scopus, Social Science Premium Collection and Web of Science, reported using ENTREQ and PRISMA. Quality assessment was performed for the individual studies. Thematic analysis and the GRADE-CERQual approach were used in the synthesis including the assessment of confidence in the evidence. RESULTS: The model was tested against the evidence in 15 studies appraised with moderate or high quality and found represented in the literature but needed to be expanded. A refined model with a moderate/high confidence level of evidence presents elements to be used in a holistic care process; The nurse is guided to establish a trusting relationship with the patient and enable communication to identify and meet pain management needs using pharmacological and non-pharmacological management. Nurse leaders are guided to support this process by providing the right contextual conditions. CONCLUSIONS: The strengths of the confidence level in the refined model, and that it is represented from the nurse and patient perspectives in nursing research across countries and cultures, support our recommendation for empirical evaluation. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The model links the knowledge of pain management elements from individual studies together into actions to be performed in clinical practice. It also outlines the organizational support needed to make this happen. Nurses and nursing leaders are suggested to test the model to implement person-centred pain management in clinical practice. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: What Problem Did the Study Address? There is a need to transfer available evidence of person-centred pain management into practice to relieve the patient from pain. What Were the Main Findings? Person-centred pain management is of high priority for patients and nurses around the world and can be performed in a holistic care process including patient-nurse trust and communication, supported by contextual conditions to deliver timely pharmacological and non-pharmacological pain management addressing the patient's physical, psychosocial and relational care needs. Where and on Whom will the Research Have an Impact? The model is to be tested and evaluated in clinical practice to guide the providers to relieve the patient from pain. REPORTING METHOD: Relevant EQUATOR guidelines were used to report the study: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement.

Patient representatives: Crucial members of health-care working groups facing an uncertain role and conflicting expectations. A qualitative study.

BACKGROUND: Patient representatives (PRs) have been involved for decades in health-care development, and their participation is increasingly sought in health-care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse. OBJECTIVE: To explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement. DESIGN: Qualitative design using semi-structured interviews analysed by content analysis. SETTING AND PARTICIPANTS: Interviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden. RESULTS: Most participants considered the PR role important but mentioned several problems. PRs' contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present. CONCLUSION: This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care. PATIENT OR PUBLIC CONTRIBUTION: PRs were information givers in data collection.

Engagement under difficult conditions: Caring for patients with acute abdominal pain across the acute-care chain: A qualitative study.

BACKGROUND: Studies report that patients with acute abdominal pain do not always receive optimal care and can experience poor pain management, safety failures, and emotional harm. Deeper understanding of how health professionals experience care delivery is needed to improve care to patients with acute abdominal pain. AIM: To explore, from the perspective of registered nurses and physicians, how care is provided for patients with acute abdominal pain in the acute care chain, and to identify barriers that they describe in the delivery of care. METHOD: Registered nurses and physicians (n = 19) working in ambulance services, emergency departments, and surgical departments at five hospitals in Sweden were interviewed. A content analysis was performed. RESULTS: Five categories were identified; interaction: a decisive moment, competence and resources: not always available, guidelines: limited use, medical care: a main focus, and feedback and collaboration: limited across acute care chain. CONCLUSION: This study adds new insights relating to how health professionals reflect on patient needs and obstacles to satisfying them. To deliver high quality care and meet patients' fundamental needs, there is a need of general guidelines and close collaboration in the acute care chain.

Systematic Review and Meta-Analysis of Health Related Quality of Life and Reported Experiences in Patients With Abdominal Aortic Aneurysm Under Ultrasound Surveillance.

OBJECTIVE: Most screening and opportunistically detected abdominal aortic aneurysms (AAA) are small and kept under surveillance for several years before preventive surgery. Living with the diagnosis of an AAA may have an influence on the patient's life. Thus, it is important to study patients' experiences so that the screening process and follow up care are adapted to the patient's needs. The aim was to review systematically review the current knowledge of the effect on health related quality of life (HRQoL) and patients' experiences of living with an AAA while under surveillance. METHODS: A systematic literature review of quantitative and qualitative studies, which were quality assessed according to the GRADE system, was carried out. Pubmed, Cochrane, Embase, CINAHL, PsycINFO, and MEDLINE were searched. Narrative synthesis and meta-analysis were performed and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. RESULTS: Synthesis and meta-analyses of studies based on the Short Form-36 demonstrated that patients with an AAA consistently rated their general health (GH) lower than controls and conveyed no significant negative impact for patients with an AAA when assessed at follow up and compared with pre-screening. Synthesis and meta-analyses of HRQoL estimates encompassing mental health, anxiety, and depression demonstrated no significant differences for patients with AAA compared with controls, or within the AAA group. Qualitative studies revealed that patients with an AAA felt safe being under surveillance, and receiving a diagnosis of AAA set thoughts and feelings in motion regarding health, ageing, and mortality. Patients' lack of knowledge about the disease, its progression, and future planning can cause insecurity and worries. CONCLUSION: The current evidence does not support a negative impact on HRQoL from being under surveillance for an AAA. Qualitative data indicate that adequate patient information and professional care have the potential to reduce unnecessary worries and concerns in patients with an AAA.

Understanding patients' experiences of recovery after staged complex aortic repair: A phenomenological study.

AIM: To explore patients' with complex aortic diseases lived experiences of recovery between and after staged endovascular aortic repair (EVAR) procedures, including adjunctive open surgery. DESIGN: Qualitative descriptive phenomenological design, applying person-centred care and lifeworld-led health care. METHODS: Patients operated on in a staged fashion between 2012-2017 were invited to participate. Six participants underwent in-depth interviews 1-5 years postoperatively. The interviews were analysed using descriptive phenomenological method. FINDINGS: The essence of the patients' experiences was described as: a necessary, overwhelming, hard, and prolonged process with life changing consequences. Between the operations: expected tiredness where life goes on as usual and insufficient time for recovery. Short-term after all operations: overwhelming tiredness, pain and complications, mostly from neurological deficits. Losing 'yourself' and struggling to manage daily life one day to another. Long-term after all operations: gradually recovering back to 'yourself' and having to accept life with permanent setbacks and limitations. CONCLUSION: Patients with complex aortic diseases struggle with physical and psychological setbacks, continuing years after their operations. There is a need to prospectively assess different aspects of these patients' recovery, identify those with impaired recovery and establish preventive and supporting strategies. IMPACT: Patients' experience of recovery after staged aortic repair has not previously been investigated. The findings indicate that these patients struggle with various physical and psychological setbacks continuing years after their operations. These results will inform further research on this group of patients and guide healthcare professionals in the care of these patients in their transition back to recovery.

Patients' experiences of their everyday life 14 months after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy - a qualitative follow-up study.

BACKGROUND: Patients with peritoneal carcinomatosis treated with cytoreductive surgery and hyperthermic intraperitoneal chemotherapy have a long recovery process. AIM: To describe patients' experiences of their everyday lives after cytoreductive surgery and hyperthermic intraperitoneal chemotherapy. METHOD: A follow-up study with a qualitative, descriptive design. Data were collected by individual, in-depth telephone interviews with 16 patients who had been treated for peritoneal carcinomatosis 14 months earlier at a university hospital in Sweden. The interviews were performed between May and June 2013 and analysed using systematic text condensation. RESULTS: Five themes were identified: (i) finding one's new self and relating to the new situation; (ii) the disease making its presence felt through bodily complications or mental fatigue; (iii) worrying about the return of the disease and passing it on to one's children; (iv) experiencing difficulties contacting various care facilities, not having a clear plan for ongoing rehabilitation; and (v) the need for online support through the Internet and counselling for both patients and their family members. CONCLUSIONS: Despite bodily complications, mental fatigue and worries about the return of the disease, the patient's everyday life was focused on finding his/her new self and adapting to the new circumstances. Difficulties in contacting care facilities and the lack of an ongoing medical and nursing rehabilitation plan called for a need for network support for patients and their families. CLINICAL RELEVANCE: After advanced surgery, patients require a continuous medical and nursing rehabilitation plan, and a platform of support such as meetings via social media and Internet which would connect former patients and their families with future patients and their family members. A contact nurse with specific expertise should design an individual rehabilitation plan and continuously identify the individual needs for long-term support.

'It's a matter of patient safety': understanding challenges in everyday clinical practice for achieving good care on the surgical ward - a qualitative study.

BACKGROUND: Surgical care plays an important role in the acute hospital's delivery of safe, high-quality patient care. Although demands for effectiveness are high in surgical wards quality of care and patient safety must also be secured. It is therefore necessary to identify the challenges and barriers linked to quality of care and patient safety with a focus on this specific setting. AIM: To explore situations and processes that support or hinder good safe patient care on the surgical ward. METHOD: This qualitative study was based on a strategic sample of 10 department and ward leaders in three hospitals and six surgical wards in Sweden. Repeated reflective interviews were analysed using systematic text condensation. FINDINGS: Four themes described the leaders' view of a complex healthcare setting that demands effectiveness and efficiency in moving patients quickly through the healthcare system. Quality of care and patient safety were often hampered factors such as a shift of care level, with critically ill patients cared for without reorganisation of nurses' competencies on the surgical ward. CONCLUSIONS: There is a gap between what is described in written documents and what is or can be performed in clinical practice to achieve good care and safe care on the surgical ward. A shift in levels of care on the surgical ward without reallocation of the necessary competencies at the patient's bedside show consequences for quality of care and patient safety. This means that surgical wards should consider reviewing their organisation and implementing more advanced nursing roles in direct patient care on all shifts. The ethical issues and the moral stress on nurses who lack the resources and competence to deliver good care according to professional values need to be made more explicit as a part of the patient safety agenda in the surgical ward.

The impact of an intervention to improve patient participation in a surgical care unit: a quasi-experimental study.

BACKGROUND: Organizational changes in surgical care are requiring patients to become more responsible for their own care, both before and after surgery, and also during recovery. Involving patients in their care is vital to improving quality of care and patient safety. OBJECTIVE: The aim of this study was to investigate the impact of the 'Tell-us' card on patients' perceptions of quality of care, with a specific focus on patient participation. Another aim was to evaluate the use of the Tell-us card from the patients' perspective. DESIGN: A quasi-experimental design with an intervention group and control groups was used. The patient's self-written Tell-us card was introduced as the intervention. SETTING: The study was conducted in two surgical care units at a Swedish university hospital. PARTICIPANTS: A consecutive sample of patients admitted from the waiting list and from the emergency department was included (n=310). The inclusion criteria were surgical patients with a hospital stay of at least one day. Patients who were younger than 18 years, not able to speak or write in Swedish, or unable or unwilling to give informed consent to participate were excluded. METHODS: Quality of care was assessed using the questionnaire 'Quality from the Patient's Perspective'. The patients included in the intervention group were asked to write what was most important for them during the day or just before discharge on patient-written Tell-us cards. RESULTS: The use of the Tell-us card resulted in significant improvements (5 out of 17 items) in patients' abilities to participate in decisions about their nursing and medical care. The patients found the Tell-us card more useful in their interaction with registered nurses and assistant nurses than with physicians. CONCLUSIONS: The use of the Tell-us card improved patients' participation in some areas of nursing and medical care in the surgical care units. The Tell-us card is an uncomplicated and inexpensive tool that could be an important step towards improved patient participation in the surgical care unit. More research is needed to evaluate the use of the Tell-us card in different hospital units and over a longer period of time.