Results Three categories were identified: "Not receiving information or being given the option to participate", "Not being encountered in a professional manner" and "Not receiving nursing or practical support". Insufficient information, insufficient respect and insufficient empathy were described as the most common reasons for a negative professional encounter. ConclusionPatients and relatives experienced unnecessary anxiety and reduced confidence in health care after negative professional encounters. Practice implicationsThe complaints reported to the Patients' Advisory Committee could be used more effectively in health care and be regarded as important evidence when working with quality improvement. To systematically use patient stories, such as those obtained in this report, as a reflective tool in education and supervision could be one way to improve communication and bring new understanding about the patient's perspective in health care. KeywordsComplaints, communication, professional encounter and content analysis. Much research has been done on communication between patients and health professionals. For example, the power of the information communicated by the voice was studied among surgeons, and it was suggested that "how" a message is conveyed may be as important as "what" is said [8]. The physician-patient communication was studied among primary care physicians and surgeons. Physicians with no-claim seemed to conduct longer visits, educate patients more, check understanding more and use more humour during the visit than physicians with claims [9]. A study by Kuzel [10] showed that negative outcomes in the clinician-patient relationship, dominated by stories of disrespect or insensitivity, were reported as more common than technical errors in diagnosis and treatment.The Institute for Healthcare Improvement (IHI) emphasizes that the health care system needs to be more patient-centred and to involve the patients and families in the design of care. Patient-centred care requires respect for patients' values and expressed needs, information and communication, coordination of care, involvement of family, 4 and concordance between the patient and health professionals [11]. Eldh [12] concludes that health care professionals should support patient participation by recognizing the patient as an individual and as a resourceful partner. The benefits of patient-centred care could be that patients are more motivated to follow treatment advice [13] and are more satisfied with health care [14].Patient satisfaction is used as a common quality indicator in health care [15][16]. A problem using patient satisfaction as a quality indicator depends on the complexities where different factors could affect the outcome, and the reliability and validity questioned [17]. Factors such as gratitude, faith and loyalty to health care providers, could influence patient satisfaction [18] as well as background factors such as age, health status and expectations of care [19][20]. A patient's evaluation could be positive, even when care...

No abstract

Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.

The purpose was to develop and validate a new instrument suitable for measuring perceived quality of life in women with breast cancer. The instrument is to be used within conventional cancer therapy as well as in complementary care, and is called the LSQ-32 (Life Satisfaction Questionnaire). The subjects were 362 women with breast cancer in all cancer stages. Cronbach's alpha reliability coefficient of the LSQ was 0.89. The construct validity was estimated by a principal component analysis. Six orthogonal factors were identified: (1) 'Quality of family relation', (2) 'Physical symptoms', (3) 'Socioeconomic situation', (4) 'Quality of daily activities', (5) 'Sickness impact' and (6) 'Quality of close friend relation'. The criterion-related validity was estimated by comparing the LSQ-32 and the EORTC QLQ-C30. The scales/items of the EORTC QLQ-C30 were represented in the LSQ-32, but the factors 'Quality of family relation' and 'Quality of close friend relation' were not found in the EORTC QLQ-C30. It was concluded that the LSQ-32 as well as the EORTC QLQ-C30 are valuable tools in the measurement of quality of life in women with breast cancer. The LSQ-32, however, also contains an existential factor.

BackgroundThe access to various forms of support during the disease trajectory is crucial for people with cancer. The provision and use of Internet health services is increasing, and it is important to further investigate the preferences and demographical characteristics of its users. Investigating the uptake and perceived value of Internet health services is a prerequisite to be able to meet the needs in the targeted group.ObjectiveThe objective of this study was to investigate health-related Internet use among people with cancer.MethodsThe health online support questionnaire (HOSQ), examining the incentives for health-related Internet support use, was administered in two Swedish outpatient hospital clinics. Of the 350 copies of the questionnaire handed out, 285 (81.4%) were returned, answered by persons with cancer who had completed treatment or were under active surveillance or another medical treatment.ResultsA total of 215 (76.2%, 215/282) participants reported Internet use since being diagnosed with cancer. Internet-users were younger (P<.001), more likely to have a partner (P=.03), and had a higher level of education than nonusers (P<.001). The most common health-related activity on the Internet was searching for information (77.2%, 166/215), and users searched significantly more immediately after diagnosis compared with later on (P<.001). Use of My Healthcare Contacts was considered the most valuable Internet activity. Having a university degree (P ˂.001) and being younger in age (P=.01) were associated with a significantly higher frequency of health- related Internet use.ConclusionsPeople with cancer turn to the Internet for informational support that enables them to influence their care and to stay in touch with friends and relatives. Demographical differences regarding the uptake of Web-based support remains. This indicates a need for research on how to bridge this digital gap. By learning more about the use of health-related support on the Web among people with cancer, adequate support can be offered and potential strain reduced.

Objective: The aim of this study was to investigate whether there were any differences between patients who died at home and patients who died at a hospice, that is, sociodemographic variables, the family caregivers' experiences of burden, and their opinion of reasons for hospice care.Methods: The study comprises a consecutive sample of family caregivers to adult patients:~I! who were cared for by the advanced palliative home care team~APHCT! and died at home,~II! who were cared for by the APHCT and died at the Hospice,~III! who were cared for and died at the Hospice in Uppsala during a period of one year. A questionnaire was mailed to caregivers and the medical records of all the patients were analyzed.Results: The place of death differed significantly and varied according to gender and cohabitation status. Men died to a greater degree at home compared with women. The family caregivers' experiences of burden were moderate. Caregivers of patients who died at home thought that this care form has a more positive inf luence on the patients' quality of life than was the case in the other groups. They were also more satisfied with their own achievement. The caregivers' opinion of why patients needed hospice care was nearly the same in groups II ϩ III, acutely developing symptoms being the most common reason.Significance of results: This study showed that women died to a lesser degree at home than men. The explanation for this is unknown and requires further investigation. It is important to establish whether female patients or male caregivers need another type of support than male patients or female caregivers, since the aim of palliative care is that every patient who wishes to die at home should have this wish fulfilled.

Objectives: To improve the support to bereaved spouses during the year after the patient's death, a project was started consisting of three visits by a nurse (after 1, 3, and 13 months) with conversations about the patient's death and the spouse's life situation. The aim of this study was to describe the bereaved spouse's situation and adaptation during the first year after the loss.Methods: Spouses of patients cared for by The Advanced Home Care Team (APHCT) in Uppsala, Sweden, were invited to participate in the project. Each participant was encouraged to talk freely about his or her situation, but enough direction was given to ensure that all items listed on a standardized questionnaire were covered.Results: Fifty-one spouses met the inclusion criteria and were invited to participate and 45 accepted. The subjects felt quite healthy but were tired and suffered from sleep disturbance. The grief reactions had initially been high but showed a significant decline from 1 to 13 months ( p , .01). Forty-nine percent had experienced postbereavement hallucinations.Significance of results: This study showed that the bereaved spouses felt quite healthy and adjusted quite well to their new life situation, after the patient's death in a palliative care setting. The grief reactions had initially been high but showed a significant decline during the year.