Bodil Ivarsson

Waiting for cardiac surgery—support experienced by next of kin

Background: Next of kin (NoK) play a crucial role for patients waiting for cardiac surgery. Aim: To describe experience of support, in the form of important events, by next of kin while their intimates were waiting for a heart operation. Methods: The design was qualitative and the “critical incident” technique was used. Incidents were collected via interviews with 23 next of kin to patients waiting for heart surgery and the informants were chosen by the patient themselves. Findings: In all, 224 important events, both positive and negative, were identified in the interviews and two main areas emerged in the analysis: internal factors and external factors. Positive internal factors were associated with finding strength, whereas negative factors were associated with uncomfortable feelings. Positive external factors were associated with participating in care and receiving attention, whereas negative factors were associated with dissatisfaction with the health-care organization and failing social network. Conclusion: This study shows that next of kin experienced positive support when they received attention and information and felt involvement in the care. An important implication for the health-care professionals and public authorities is the understanding of the experience of support expressed by next of kin, to provide them with optimal information and support.

Women's experience of a myocardial infarction: 5 years later.

BACKGROUND Myocardial infarction (MI) has long been seen as a male disease despite the fact that it is also a health problem for women. Factors that may influence their recovery, such as co-morbidity and requirements for support, have received less scientific attention. AIM To explore and describe how women conceived their health and daily life 5 years after an MI. METHOD An explorative and descriptive approach inspired by phenomenography was chosen as the design. The present study includes 12 women who have been described in earlier short-term studies. FINDINGS The women described how the MI caused limitations in their lives even 5 years after the MI. They experienced physical restrictions, fatigue and also other health complaints. Furthermore, the older women suffered from various co-morbidities such as diabetes, kidney disease, high blood pressure, and stroke. Some women did not perceive their heart disease to interfere in daily life. Many of the women had thoughts about having a new MI. Furthermore, some women were grateful and described it as having a second opportunity. CONCLUSION   The present study indicates how women in the recovery process 5 years after an MI still need support to continue with lifestyle changes. The women continue to struggle with different kinds of issues, such as financial stress, co-morbidity and side effects of medication. Support from the health care only in the first year after the MI is not enough. The women should benefit from the possibility to visit or consult professionals in primary care with knowledge of CHD.

Recently accepted for the waiting list for heart or lung transplantation - patients' experiences of information and support.

Ivarsson B, Ekmehag B, Sjöberg T. Recently accepted for the waiting list for heart or lung transplantation – patients’ experiences of information and support. 
Clin Transplant 2011: 25: E664–E671.

Experiences of supportive care when waiting for a lung re-transplantation

Objectives: Lung transplant patients and their next of kin share the experiences of illness but little is known in the face of a lung re-transplantation. To describe patients’ and next of kin’s experiences of supportive care while awaiting lung re-transplantation and the objective was to highlight a small group with special circumstances and needs. Methods: Using qualitative content analysis, seven adult patients and seven next of kin were consecutively selected from a regional lung transplantation centre and individually interviewed shortly after decision about lung re-transplantation. Results: The experiences of supportive care were captured in one main category: ‘once again haunted by death’ and three sub-categories: ‘when life turns and death once again snorts down your neck’, ‘the importance of information’, and ‘perceptions of support’. A complex interaction between the experience of waiting, and communication patterns, emotional states, and social support was shown. Conclusion: This study provides insights into the complex interaction between the experience of waiting for a second lung transplant and communication patterns, emotional states, social support and social roles between patients, next of kin, healthcare professionals, and the health and social welfare system. There is a need for developing supportive care programme to achieve the best possible care.

Patients experiences of information and support during the first six months after heart or lung transplantation

Background: Heart or lung recipients are taught about a new lifestyle, risk factors, medication, food restrictions and exercise so they can take an active role and responsibility for disease management after transplantation. However, little is known about patients’ experiences of information and support in these situations. Objective: The aim of the study was to illuminate how patients, six months after a heart or lung transplantation, experienced the information and support they received in connection with the transplantation. Methods: Sixteen patients were included in the study, and interviews were analysed using a qualitative content analysis method. Results: The findings are presented in three themes: Alternating between gratitude and satisfaction and resignation, Striving to follow treatment strategies and Returning to a relatively normal life. The patients expressed gratitude when their health improved markedly but resignation when complications or side effects occurred due to the lack of information and support they received. Conclusions: Healthcare professionals can make specific improvements in the information they provide to patients to increase their preparedness. Information and support should be provided regularly so as to avoid non-adherence to essential guidelines. To return to a normal life, patients need support from healthcare organizations, families, employers and society in general. These findings should be taken into account in the clinical management of transplant patients, particularly those with dependent children or failing social networks.

Positive Experience of a Mobile Radiography Service in Nursing Homes

Background: For elderly people living in nursing homes, a transport to hospital for a radiological examination can lead to increased anxiety, disorientation and other problems related to the new environment. Objective: To investigate the usefulness of a mobile radiography service for radiological assessment of patients in nursing homes from the patient and staff perspectives. Methods: Lightweight equipment with a digital flat-panel detector was used for mobile radiography on nursing home patients in their own rooms. Data on patient and staff experiences from the service were collected using a questionnaire with closed and open-ended questions. Image quality was evaluated by the radiographer and a radiologist. Results: The majority of 241 radiography examinations were of the musculoskeletal system (94%). Twelve of 123 patients had pathology that required hospital treatment, while 22 patients with radiographic pathology could be treated locally. The main beneficial factors were security and comfort, acceptance from the patients, no need for transportation, no need for staff to be absent from the nursing homes. Conclusion: Mobile radiography in nursing homes is technically feasible, with good image quality. The most beneficial results were that patients avoided unnecessary transport back and forth to the hospital, and that the majority of patients could be treated locally.

Quality of life measurements as an indicator for timing of support after oesophagectomy for cancer: a prospective study.

BackgroundOesophagectomy is a major procedure with known side effects and reduced postoperative quality of life (QOL). It has been shown that support of patients in their new life situation is often lacking. Knowledge about how QOL changes over time is fundamental for addressing patient needs and for determining the optimal timing of supportive care. The aim of this study was to identify QOL changes over time as well as factors that may impact patient QOL during the first year after oesophagectomy for cancer.MethodsPatients operated on for adenocarcinoma or squamous cell cancer of the oesophagus were included in this study. Seventy-nine patients completed the European Organisation for Research and Treatment of Cancer QOL questionnaires (QLQ-C30 and QLQ-OES18) before and 2, 4, 6, 9, and 12 months after surgery. A general linear model with repeated measurement analysis of variance was used for statistical testing.ResultsThere was a significant QOL nadir at 2 months compared to 12 months after surgery (QLQ-C30 function scales p < 0.001, symptom scales p < 0.001, QLQ-OES18 scales p < 0.001). Treatment with proton-pump inhibitors was associated with enhanced QOL according to QLQ-C30 symptom scales (p = 0.003) and OES-18 scales (p = 0.015), but age, gender and American Society of Anaesthesiologists classification did not significantly impact QOL.ConclusionsPatient QOL is severely hampered the first year after oesophagectomy for cancer, with a nadir at 2 months after surgery. Treatment with proton-pump inhibitors improved patient responses to symptom scales. Evidence of severely affected QOL after surgery indicates that these patients need support at an early stage after surgery. These results can be used by healthcare professionals to develop a postoperative supportive-care programme that is timed and better optimised to meet patient needs. Trial registration: EudraCT database 2009-009997-28.

Sexual Knowledge in Patients With a Myocardial Infarction and Their Partners

Background:Sexual health and sexual activity are important elements of an individual’s well-being. For couples, this topic is often affected after a myocardial infarction (MI). It has become increasingly clear that, after an MI, patients are insufficiently educated on how to resume normal sexual activity. However, sufficient data on the general knowledge that patients and partners have about sexual activity and MI are lacking. Objective:The aims of this study were to explore and compare patients’ and partners’ sexual knowledge 1 month after a first MI and 1 year after the event and to compare whether the individual knowledge had changed over time. A second aim was to investigate whether patients and their partners report receiving information about sexual health and sexual activity from healthcare professionals during the first year after the event and how this information was perceived. Subjects and Methods:This descriptive, comparative survey study enrolled participants from 13 Swedish hospitals in 2007–2009. A total of 115 patients with a first MI and their partners answered the Sex After MI Knowledge Test questionnaire 1 month after the MI and 1 year after the event. Correct responses generated a maximum score of 75. Results:Only 41% of patients and 31% of partners stated that they had received information on sex and relationships at the 1 year follow-up. The patients scored 51 ± 10 on the Sex After MI Knowledge Test at inclusion into the study, compared with the 52 ± 10 score for the partners. At the 1-year follow-up, the patients’ knowledge had significantly increased to a score of 55 ± 7, but the partners’ knowledge did not significantly change (53 ± 10). Conclusions:First MI patients and their partners reported receiving limited information about sexual issues during the cardiac rehabilitation and had limited knowledge about sexual health and sexual activity.

The desire for involvement in healthcare, anxiety and coping in patients and their partners after a myocardial infarction

Background: There is a lack of data about the information preferences of patients and their partners after a myocardial infarction. Aim: This paper explores anxiety, depression, coping and the desire to be actively involved in care in relation to age, gender and education level in myocardial infarction patients and partners. Methods: One hundred and twenty-eight patients and their partners answered the Swedish version of the Krantz Health Opinion Survey, the Hospital Anxiety and Depression Scale, and the Mastery Scale one year after the patient’s myocardial infarction. Results: More active roles in decision-making during care were desired by females, younger patients and partners, and patients and partners with higher education levels. Female partners reported more anxiety than male partners, and female patients reported more depression than male patients. No differences between groups were detected in coping; overall coping was rated high. Conclusions: Secondary prevention should consist of person-centred support to both the patients and their partners, since factors such as age, gender and education level can influence information preferences during patient care.

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.