Waiting for a heart or lung transplant: Relatives' experience of information and support.

To describe the relatives' experiences of information and support while heart or lung transplant candidates were waiting for a transplantation

Information, social support and coping in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension-A nationwide population-based study

Objective: Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) decrease life expectancy for affected patients. The aim was to describe the perceptions of received information regarding diagnosis, treatment and management, as well as social support and coping perceived by patients with PAH or CTEPH. Methods: A descriptive, national cohort survey that included patients from all PAH-centres in Sweden. A quantitative methodology was employed where all patients received three questionnaires, QLQ-INFO25, Mastery Scale and Social Network & Support Scale. Results: The response rate was 74% (n. =325), mean age 66. ±. 14. years, 71% were female and 69% were diagnosed with PAH and 31% with CTEPH. Sixty percent of respondents were satisfied with the received information and felt it was helpful. Best experiences were of information in the areas of medical tests (70%) and the disease (61%). Forty-five percent wanted more information. Men described their social network as more accessible than women (p. =0.004). Those living alone had a lower coping ability. Conclusion: Despite a high level of satisfaction with the received information, almost half of the patients wanted more information. Practice implications: Regular repeating or giving new information should be an ongoing process in the care of patients at the PAH-centres

Patient reactions to cancelled or postponed heart operations.

Objectives The aim was to survey the rate and cause of cancellations of planned cardiac operations at a Swedish clinic during 1999, and to study how the patients were affected. Design Questionnaires were distributed to 74 patients who had their operations cancelled. Their mood after discharge was measured with The Hospital Anxiety and Depression scale. Ninety-three patients, who were operated on without postponement, served as controls. Results Sixty-one percent of the patients in the cancellation group reacted negatively, especially if the reason for cancellation was organizational (P = 0.03). The women in the cancellation group had a significantly higher degree of depression than men (P = 0.01) and both women (P = 0.02) and men (P = 0.003) in the control group. Most of the patients, however, were satisfied with the nursing staff's reception and information. Conclusions The patients reacted negatively to the cancellation, especially if it had organizational reasons. Women subjected to cancellation had a significantly higher degree of depression than other patients. To be avoided, organizational and medical problems must be identified in time. One way to do this is to introduce a preadmission nurse clinic

Perceptions of received information, social support, and coping in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension.

Patients with a life-limiting diagnosis of pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) need disease-specific information, ability to cope, and functioning social networks. This cohort study investigated the experiences of PAH and CTEPH patients who received information about their diagnosis, treatment, and management, in addition to coping and social support. Sixty-eight adult patients (mean ± SD, age 67 ± 14; 66% women) were included. A total of 54% of the patients wanted more information. Patients received information mostly in areas concerning medical test procedures, the diagnosis, disease severity, possible disease causes, and how to manage their disease. Coping ability was significantly better in patients who were satisfied with the received information (P = 0.0045). The information given to PAH or CTEPH patients and their communication with healthcare professionals can be greatly improved. Gaps in information and misunderstandings can be avoided by working in cooperation with the patients, their relatives, and within the PAH team

Waiting For Heart Surgery.

Patients waiting for cardiac surgery often consider the period from the decision for surgery to the time for the operation as long, heavy and dreary. Therefore, it is important that patients are supplied with structured oral and written information regarding their disease and its treatment, so that they are able to understand and discuss the forthcoming operation, the risk of complications and the possibility that surgery may be delayed. Next of kin play a crucial role for patients waiting for cardiac surgery and are often forgotten by health care personnel. The overall aims of this thesis were to describe experiences of support while waiting for heart surgery, from the perspective of patients and their next of kin, and to describe the patients? experiences of information received about the risks of complications in relation to the surgery. A further aim was to investigate the frequency of postponements and cancellations and to study how these affected the patients. A total of 531 patients admitted to bypass surgery or valve replacement and 23 next of kin were included in these five studies. Data were collected through questionnaires and semi-structured interviews using the critical incident technique (CIT). Degree of anxiety and depression was measured using the HADS, and distress was measured using the IES. Both patients and next of kin described experiences as positive when they received attention and information and felt involved in the care, and negative when they were dissatisfied with the health care organization and lacked a supportive social network (Study I and II). Patients who received written extended information about the risk of complications in connection with cardiac surgery were satisfied with the information without being more affected by anxiety, depression or distress than patients who received traditional written information (Study III). Patients reacted negatively to postponement of surgery, especially if due to organizational reasons, which were also the most common reasons for postponements. Some patients experienced physical or psychosomatic symptoms and some feared cardiovascular problems after postponement or cancellation of their operation. Women in the cancellation group had a significantly higher degree of depression than men in the same group, and than both men and women in the control group (Studies IV and V). Patients and next of kin were generally satisfied with the reception from the health care professionals (Studies I-V). Implications of these studies are that organizational and medical problems must be identified in time to avoid postponements, and that patients and their next of kin must be allowed to participate in the care and must receive attention from health care professionals. If patients and their next of kin are carefully and thoroughly informed, they are more satisfied and probably better prepared if complications occur

Information from health care professionals about sexual function and coexistence after myocardial infarction: a Swedish national survey.

BACKGROUND: After a myocardial infarction (MI), many patients and their partners experience problems with marital and sexual life. METHODS: A Swedish national survey was carried out to obtain knowledge on the information provided by cardiac health care professionals on the subject of sexual function and coexistence after an MI. It consisted of a questionnaire that was designed, tested, and sent to 121 coronary care units. RESULTS: The coronary care unit teams rarely provided oral or written information about sexual function and coexistence to patients with MI or their partners. The health care professionals lacked competence in these areas. CONCLUSION: It is essential that health care professionals are educated on and inform the patient with MI about the significance of sexual function and coexistence. Further research is required regarding patients' and their partners' need for information and support in this area

Nurse Telephone Counseling Services as a “Gatekeeper” in an Internet-Based Digital Doctor Reception : A Mixed Questionnaire Survey

Objective: A large number of different types of digital innovations for health and medical care have been developed in Sweden under the concept of eHealth. Employees’ interest is of great importance in determining the success of different new digital interventions and technologies. Purpose: In this study, we aimed to elucidate the nurses’ experiences as a first “gatekeeper” in an Internet-based Digital Doctor Reception (DDR) concept. Methods: Our 16 informants were recruited among nurses who participated in a DDR pilot project that was completed in April 2019. A mixed questionnaire survey was used to elucidate the nurses’ experiences of collaboration & challenges, technical functionality, and DDR as an activity. The results were descriptively summarized with index values (IVs, 0-1.0), supplemented with a 10-point Likert-type scale that estimated satisfaction and views regarding personal experiences. Results: Collaboration and challenges were experienced as fairly good (IV, 0.58), and technical functionality was experienced as good (IV, 0.80). The experience of DDR as an activity was described positively with an IV of 0.75. The overall experience of the concept (IV, 0.68), corresponds well to the median satisfaction value of 6.5 (interquartile range, 6-9). Content analysis identified 2 main categories: “Facilitators in using DDR experienced by nurses” and “Barriers in using DDR experienced by nurses.” Nurses generally felt positive about participating in the development of an eHealth service. However, they suggested that DDR triaging should take place at the health care center level. The nurses also observed that certain patient groups were excluded from the DDR concept, and sometimes experienced this new way of triaging as less challenging. Conclusion: The informants in our study generally described satisfaction and an overall good experience with the DDR concept. However, some informants felt that the concept was sometimes more stressful and less challenging compared with normal working methods