Designing quality of care--contributions from parents: Parents' experiences of care processes in paediatric care and their contribution to improvements of the care process in collaboration with healthcare professionals.
The aim of this article was to explore whether current quality dimensions for health care services are sufficient to capture how parents perceive and contribute to quality of health care.
New quality improvement initiatives that actively involve patients must be examined with a critical view on established quality dimensions to ensure that these measures support patient involvement.
This paper used a qualitative and descriptive design.
This paper is based on interviews with parents participating in two experience-based co-design projects in a Swedish hospital that included qualitative content analysis of data from 12 parent interviews in paediatric care.
Health care professionals often overemphasize their own significance for value creation in care processes and underappreciate parents' ability to influence and contribute to better quality. However, quality is not based solely on how professionals accomplish their task, but is co-created by health care professionals and parents. Consequently, assessment of quality outcomes also must include parents' ability and context.
This paper questions current models of quality dimensions in health care, and suggests additional sub-dimensions, such as family quality and involvement quality.
This paper underscores the importance of involving parents in health care improvements with health care professionals to capture as many dimensions of quality as possible.
To explore patients' most distressing concerns during a hospital stay.
The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting.
This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension.
The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world.
Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.
In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.
A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.
A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children
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.
Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone.
There are few scales in Swedish that assess symptoms in the dimensions of frequency, severity, and distress.
The purpose of this study was to translate and determine the validity and reliability of the Memorial Symptom Assessment Scale (MSAS) in a Swedish population of postmenopausal women newly diagnosed with primary or recurrent breast cancer.
The original 32-item MSAS, a self-report measure for assessing symptom distress and frequency in cancer patients, was translated and administered to 206 patients (primary, n = 150 and recurrent, n = 56).
The MSAS psychological symptom subscale correlated with the emotional and cognitive functioning subscales of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), and showed the highest correlation with the EORTC QLQ-C30 emotional functioning subscale (r = -0.78; P