Recent legislation in many countries has given patients the right to access their own patient records. Making health-care professionals' assessments and decisions more transparent by giving patients access to their records is expected to provide patients with useful health information and reduce the power imbalance between patient and provider. We conducted both a mail survey and a face-to-face interview study, including patients who had requested a paper copy of their patient records (EPR), to explore their experiences. For many study participants, a view of their records filled in holes in the oral information they previously received. They had problems understanding parts of what they read, but rarely asked for help. Instead they searched for explanations on the Internet or attempted to understand based on the context. Patients are still afraid of seeming suspicious or displeased if they indicate that they would like to read their records. Health-care organizations should consider actively offering patients the chance to view their clinical documentation to a larger extent than what has been done so far.
This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals' awareness of FCs' challenging situation and the potential impact this has on the FCs' ability to provide care to the patient.
Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.
To study health related quality of life (HRQOL) and depressive symptoms in adolescents with chronic fatigue syndrome (CFS) and to investigate in which domains their HRQOL and depressive symptoms differ from those of healthy adolescents.
Several symptoms such as disabling fatigue, pain and depressive symptoms affect different life domains of adolescents with CFS. Compared to adolescents with other chronic diseases, young people with CFS are reported to be severely impaired, both physiologically and mentally. Despite this, few have investigated the HRQOL in this group.
This is a cross-sectional study on HRQOL including 120 adolescents with CFS and 39 healthy controls (HC), between 12 and 18 years. The Pediatric Quality of Life Inventory?, 4.0 (PedsQL) was used to assess HRQOL. The Mood and Feelings Questionnaire assessed depressive symptoms. Data were collected between March 2010 and October 2012 as part of the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial). Linear and logistic regression models were used in analysis, and all tests were two-sided.
Adolescents with CFS reported significantly lower overall HRQOL compared to HCs. When controlling for gender differences, CFS patients scored 44 points lower overall HRQOL on a scale from 0-100 compared to HCs. The domains with the largest differences were interference with physical health (B?=?-59, 95 % CI -54 to -65) and school functioning (B?=?-52, 95 % CI -45 to -58). Both depressive symptoms and being a patient were independently associated with lower levels of HRQOL CONCLUSION: The difference in HRQOL between CFS patients and healthy adolescents was even larger than we expected. The large sample of adolescents with CFS in our study confirms previous findings from smaller studies, and emphasizes that CFS is a seriously disabling condition that has a strong impact on their HRQOL. Even though depressive symptoms were found in the group of patients, they could not statistically explain the poor HRQOL.
An increasing number of patients now make use of their legal right to read their medical record. We report findings from a study in which we conducted qualitative interviews with 17 Norwegian adult patients about their experiences of requesting a copy of their medical record following a hospital stay. Interviews took place between May, 2008 and April 2009. The analytical process, guided by qualitative content analysis, identified two main themes; "keeping a sense of control" and "not feeling respected as a person". The informants' experiences with reading their own medical record were often connected to their experiences in direct communication with health care professionals during the hospital stay, revealing a delicate interaction between trust and power. The informants were hoping for a more mutual exchange of information and knowledge from which they could benefit in the management of their own health. We conclude that to meet patients' expectations of mutuality, health care professionals in hospitals need to be more conscious about their attitudes and communication skills as well as how they exercise their power to define the patient's situation. At the same time, there should be more focus on how structural changes in the organization of hospitals may have impaired the capacity of health care professionals to meet these expectations. In the future, greater attention should also be paid to information exchange to avoid placing unreasonable responsibility on the patient to compensate for deficits in the health care system.
This study aims to describe surgically treated lung cancer patients' experiences of coming home after discharge from hospital to expand the knowledge about their supportive care needs.
Existing research reports that patients suffer from a high symptom burden after lung cancer surgery. Such burden has negative impacts on their physical, emotional and social wellbeing. Few studies have explored the surgically treated patients' supportive care needs after being discharged from hospital.
This study used a qualitative descriptive design, following the EQUATOR guidelines (COREQ).
The information about 14 patients' experiences was collected from semi-structured interviews. The interviews were conducted in their homes within three weeks after their discharge from hospital. The data were analysed using qualitative content analysis.
The main theme of the study, "Longing to get back on track with their lives", consisted of four categories: "Burdened with problems related to postoperative symptoms and treatment", "Struggling for the needed support", "A pendulum between being in need of support and being independent", and "Striving to adapt to a new way of life". The participants experienced many problems related to postoperative symptoms and treatment. Information and support from healthcare professionals were deficient. Life was characterised by striving to be independent and adapting to a new lifestyle.
The findings demonstrate the supportive care needs of surgically treated lung cancer patients. Nurses and other healthcare professionals could offer more individualised support during the first few weeks after the patients' discharge by including them and their caregivers in the discharge planning.
Knowledge of patients' perspectives and experiences of everyday life at home after lung cancer surgery can provide hospital nurses with a better understanding of what is important for such patients beyond hospitalisation. This knowledge should be included in discharge planning.
To translate and assess the validity and reliability of the original American Care Transitions Measure, both the 15-item and the shortened 3-item versions, in a sample of people in transition from hospital to home within Sweden.
Translation of survey items, evaluation of psychometric properties.
Ten surgical and medical wards at five hospitals in Sweden.
Patients discharged from surgical and medical wards.
Psychometric properties of the Swedish versions of the 15-item (CTM-15) and the 3-item (CTM-3) Care Transition Measure.
We compared the fit of nine models among a sample of 194 Swedish patients. Cronbach's alpha was 0.946 for CTM-15 and 0.74 for CTM-3. The model indices for CTM-15 and CTM-3 were strongly indicative of inferior goodness-of-fit between the hypothesized one-factor model and the sample data. A multidimensional three-factor model revealed a better fit compared with CTM-15 and CTM-3 one factor models. The one-factor solution, representing 4 items (CTM-4), showed an acceptable fit of the data, and was far superior to the one-factor CTM-15 and CTM-3 and the three-factor multidimensional models. The Cronbach's alpha for CTM-4 was 0.85.
CTM-15 with multidimensional three-factor model was a better model than both CTM-15 and CTM-3 one-factor models. CTM-4 is a valid and reliable measure of care transfer among patients in medical and surgical wards in Sweden. It seems the Swedish CTM is best represented by the short Swedish version (CTM-4) unidimensional construct.
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The Virtual Health Room (VHR) is an ehealth initiative in the village of Slussfors in northern Sweden. Construction of VHRs in other locations is taking place, and the Centre for Rural Medicine in the Västerbotten County Council primary care department has implemented a VHR evaluation framework. This research focuses on evaluation of patient perceptions of the usability of the VHR and its contribution to their health care.
Nineteen of the 25 unique users of the VHR during 2014/15 completed a survey asking about their attitudes to their own health (using the 13-question version of the Patient Activation Measure (PAM)), their demographic attributes, and their satisfaction with their visit to the VHR.
Respondents with lower PAM scores were less satisfied with the technical performance of the VHR, but equally likely to think the VHR made a good contribution to access to health care. In contrast, older patients were less likely to value the contribution of the VHR, but no less likely to be satisfied with its technical performance. There were no relationships between level of education and distance travelled and perceptions of the VHR.
The research clearly demonstrated the distinction between technical performance of an ehealth initiative and its overall contribution to health care and access. Evaluation frameworks need to consider both aspects of performance. Transferability of these findings to other settings may depend at least in part on the nature of the catchment area for the VHR, with the Slussfors catchment being quite small and the impact of distance on access consequently limited.
The aim of this study was to understand how nurses experience patients' dignity in Swedish medical wards. A hermeneutic approach and Flanagan's critical incident technique were used for data collection. Twelve nurses took part in the study. The data were analysed using hermeneutic text interpretation. The findings show that the nurses who wanted to preserve patients' dignity by seeing them as fellow beings protected the patients by stopping other nurses from performing unethical acts. They regard patients as fellow human beings, friends, and unique persons with their own history, and have the courage to see when patients' dignity is violated, although this is something they do not wish to see because it makes them feel bad. Nurses do not have the right to deny patients their dignity or value as human beings. The new understanding arrived at by the hermeneutic interpretation is that care in professional nursing must be focused on taking responsibility for and protecting patients' dignity.
Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.