Preferences for home care to enable home death among adult patients with cancer in late palliative phase - a grounded theory study.

BACKGROUND: The wish to be cared for and to die at home is common among people with end-stage cancer in the western world. However, home deaths are declining in many countries. The aim of this study was to explore the preferences for home care over time to enable home death among adult patients with cancer in the late palliative phase. METHODS: A qualitative method was applied according to grounded theory (Corbin & Strauss, 2008). Data was collected using individual interviews (n = 15) with nine adult patients. One to two follow up interviews were conducted with four patients. Sampling, data collection and constant comparative analysis were undertaken simultaneously. RESULTS: The findings are presented as a conceptual model of patients' preferences for care to enable home death. The core category "Hope and trust to get the care I need to die at home" showed that the preference to die at home seemed stable over time and did not change with deterioration in health status and progression in illness. Five categories were related to the core category. The categories "being in the present", "be safe and in charge" and "be seen and acknowledged" describe the patients' preferences to live a meaningful life until death and be the same person as always. These preferences depended on the categories describing characteristics of healthcare personnel and the organisation of care: "reliable, compassionate and competent healthcare personnel" and "timely, predictive, continuous and adaptive organisation". CONCLUSION: An important preference over time was to be here and now and to live as meaningful a life as possible until death. Moreover, the patients preferred to retain control over their lives, to be autonomous and to be seen as the person they had always been. To achieve this, person-centred care provided by healthcare personnel with competence, skills and enough/ample time were required. In addition, home care needed to be organised in a way that ensured continuity and predictability. Systematic implementation of a person-centred care model and the use of advanced home care plans with continued re-evaluation for patients' preferences of home care were proposed measures to enable home death.

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study.

BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.

Establishing the HLS-Q12 short version of the European Health Literacy Survey Questionnaire: latent trait analyses applying Rasch modelling and confirmatory factor analysis.

BACKGROUND: The European Health Literacy Survey Questionnaire (HLS-EU-Q47) is widely used in assessing health literacy (HL). There has been some controversy whether the comprehensive HLS-EU-Q47 data, reflecting a conceptual model of four cognitive domains across three health domains (i.e. 12 subscales), fit unidimensional Rasch models. Still, the HLS-EU-Q47 raw score is commonly interpreted as a sufficient statistic. Combining Rasch modelling and confirmatory factor analysis, we reduced the 47 item scale to a parsimonious 12 item scale that meets the assumptions and requirements of objective measurement while offering a clinically feasible HL screening tool. This paper aims at (1) evaluating the psychometric properties of the HLS-EU-Q47 and associated short versions in a large Norwegian sample, and (2) establishing a short version (HLS-Q12) with sufficient psychometric properties. METHODS: Using computer-assisted telephone interviews during November 2014, data were collected from 900 randomly sampled individuals aged 16 and over. The data were analysed using the partial credit parameterization of the unidimensional polytomous Rasch model (PRM) and the 'between-item' multidimensional PRM, and by using one-factorial and multi-factorial confirmatory factor analysis (CFA) with categorical variables. RESULTS: Using likelihood-ratio tests to compare data-model fit for nested models, we found that the observed HLS-EU-Q47 data were more likely under a 12-dimensional Rasch model than under a three- or a one-dimensional Rasch model. Several of the 12 theoretically defined subscales suffered from low reliability owing to few items. Excluding poorly discriminating items, items displaying differential item functioning and redundant items violating the assumption of local independency, a parsimonious 12-item HLS-Q12 scale is suggested. The HLS-Q12 displayed acceptable fit to the unidimensional Rasch model and achieved acceptable goodness-of-fit indexes using CFA. CONCLUSIONS: Unlike the HLS-EU-Q47 data, the parsimonious 12-item version (HLS-Q12) meets the assumptions and the requirements of objective measurement while offering clinically feasible screening without applying advanced psychometric methods on site. To avoid invalid measures of HL using the HLS-EU-Q47, we suggest using the HLS-Q12. Valid measures are particularly important in studies aiming to explain the variance in the latent trait HL, and explore the relation between HL and health outcomes with the purpose of informing policy makers.

The relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality.

BACKGROUND: Little is known about the combination of person- and organization- related conditions and the relationships with patients' perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients' perceptions of palliative care quality. METHODS: A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n = 72), hospice day care (n = 51), palliative units in nursing homes (n = 30) and home care (n = 38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients' Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables - Person- and organization-related conditions, - while controlling for differences in covariates. RESULTS: Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person - related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality. CONCLUSION: Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from palliative care contexts are needed to confirm the findings and to investigate additional organizational factors that might influence patients' perceptions of care quality.

Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study.

BACKGROUND: Patients' perceptions of care quality within and across settings are important for the further development of palliative care. The aim was to investigate patients' perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings. METHOD: A cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients' Perspective instrument-palliative care (QPP-PC). QPP-PC comprises four dimensions and 12 factors; "medical-technical competence" (MT) (2 factors), "physical-technical conditions" (PT) (one factor), "identity-orientation approach" (ID) (4 factors), "sociocultural atmosphere" (SC) (5 factors), and three single items (S); medical care, personal hygiene and atmosphere. Data were analysed using paired-samples t-test and analysis of covariance while controlling for differences in patient characteristics. RESULTS: Patients' perceptions of care received within settings showed high scores for the factors and single items "honesty" (ID) and "atmosphere" (S) in all settings and low scores for "exhaustion" (MT) in three out of four settings. Patients' perceptions of importance scored high for "medical care" (S), "honesty" (ID), "respect and empathy" (ID) and "atmosphere" (S) in all settings. No aspects of care scored low in all settings. Importance scored higher than perceptions of care received, in particular for receiving information. Patients' perceptions of care across settings differed, with highest scores in hospice inpatient care for the dimensions; ID, SC, and "medical care" (S), the SC and "atmosphere" (S) for hospice day care, and "medical care" (S) for palliative units in nursing homes. There were no differences in subjective importance across settings. CONCLUSION: Strengths of services related to identity-orientation approach and a pleasant and safe atmosphere. Key areas for improvement related to receiving information. Perceptions of subjective importance did not differ across settings, but perceptions of care received scored higher in more care areas for hospice inpatient care, than in other settings. Further studies are needed to support these findings, to investigate why perceptions of care differ across settings and to highlight what can be learned from settings receiving high scores.

Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

BACKGROUND: Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. METHOD: A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. RESULTS: The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. CONCLUSION: The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was developed and psychometrically evaluated in a sample of Norwegian patients with various diagnoses receiving palliative care in different care contexts. The evaluation of the QPP-PC shows promising results, although it needs to be further validated and tested in other contexts and countries.

Patients' preferences in palliative care: A systematic mixed studies review.

BACKGROUND: It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient's combined preferences for all elements that constitute palliative care. AIM: The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research. DATA SOURCES: Studies were retrieved by searching databases - the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts - from 1946 to 2014, and by hand searching references in the studies included. DESIGN: A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. Data were synthesized using integrative thematic analysis. RESULTS: The 13 qualitative and 10 quantitative studies identified included participants with different illnesses in various settings. Four themes emerged representing patient preferences for care. The theme 'Living a meaningful life' illustrated what patients strived for. The opportunity to focus on living required the presence of 'Responsive healthcare personnel', a 'Responsive care environment' and 'Responsiveness in the organization of palliative care'. CONCLUSION: The four themes may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients' preferences.

Diagnosing dying: an integrative literature review.

BACKGROUND: To ensure patients and families receive appropriate end-of-life care pathways and guidelines aim to inform clinical decision making. Ensuring appropriate outcomes through the use of these decision aids is dependent on timely use. Diagnosing dying is a complex clinical decision, and most of the available practice checklists relate to cancer. There is a need to review evidence to establish diagnostic indicators that death is imminent on the basis of need rather than a cancer diagnosis. AIM: To examine the evidence as to how patients are judged by clinicians as being in the final hours or days of life. DESIGN: Integrative literature review. DATA SOURCES: Five electronic databases (2001-2011): Cochrane Central Register of Controlled Trials (CENTRAL) on The Cochrane Library, MEDLINE, EMBASE, PsycINFO and CINAHL. The search yielded a total of 576 hits, 331 titles and abstracts were screened, 42 papers were retrieved and reviewed and 23 articles were included. RESULTS: Analysis reveals an overarching theme of uncertainty in diagnosing dying and two subthemes: (1) 'characteristics of dying' involve dying trajectories that incorporate physical, social, spiritual and psychological decline towards death; (2) 'treatment orientation' where decision making related to diagnosing dying may remain focused towards biomedical interventions rather than systematic planning for end-of-life care. CONCLUSIONS: The findings of this review support the explicit recognition of 'uncertainty in diagnosing dying' and the need to work with and within this concept. Clinical decision making needs to allow for recovery where that potential exists, but equally there is the need to avoid futile interventions.

Mental distress and subsequent use of psychotropic drugs among adolescents-a prospective register linkage study.

PURPOSE: To investigate the association between mental distress, other factors, and subsequent use of psychotropic drugs in adolescents aged 15-16 years. METHODS: This study is based on information retrieved from the Norwegian Youth Health Surveys (2000-2003) and linked to prescription data from the Norwegian Prescription Database (2004-2009). The study population included 11,620 adolescents aged 15-16 (87% response rate) years. Self-reported mental distress (Hopkins Symptom Checklist-10 score 1.85) was recorded along with health and lifestyle habits, education plans, and family economics. Incident psychotropic drug use (outcome measure) was defined ≥1 prescriptions of one of the following psychotropic drugs: anxiolytics, hypnotics, antidepressants, or phenothiazines registered in the Norwegian Prescription Database. RESULTS: Overall, 15.5% of the adolescents reported mental distress, 75% of them were girls. For both genders, incident psychotropic use was significantly higher among those reporting mental distresses at baseline, compared with the rest of the participants. The highest psychotropic drug use was observed among mentally distressed girls (27.7%). Mental distress was significantly associated with incident use of psychotropic drugs (odds ratio: 2.25, 95% confidence interval: 1.97-2.55). After adjustment for confounding factors and inclusion of potential mediating factors, the odds ratio attenuated to 1.59 (95% confidence interval: 1.35-1.86). CONCLUSIONS: The prevalence of mental distress among adolescents may have consequences for health promotion. Public health nurses in Norway, working in health centers and schools, have a responsibility to promote health and prevent health problems. They have the opportunity and a responsibility to identify vulnerable young people.

Perception of quality of care: comparison of the views of patients' with lung cancer and their family members.

AIMS AND OBJECTIVES: To explore potential differences within dyads of patients' with lung cancer and family members' judgment of different aspects of quality of care and relationships between quality of care and personal and health-related characteristics. BACKGROUND: High quality of care is important for acceptable quality of life in patients in palliative care. If patients are unable to participate in quality of care assessments or decision-making, family members might often act as proxies, despite the complicated nature of their own situation. DESIGN: Cross-sectional survey design. METHOD: A patient and family member version of the abbreviated questionnaire Quality from Patients' Perspective, with additional items about perceived health and opinions about care, was mailed to members of the Swedish lung cancer Patient Organisation. Wilcoxon's signed rank test was used to identify potential differences within 51 patient-family member dyads' quality of care ratings. Relationships between Quality from Patients' Perspective dimensions and demographic and health-related variables were examined with Spearman's correlations. RESULTS: Patient-family member dyads had high levels of agreement in ratings of perceived reality of quality of care. Family members generally rated the subjective importance of individual items higher than did the patient in the dyad, with significant difference in the dimension 'socio-cultural approach'. Older patients were found to rate the physical-technical conditions higher than younger patients, in relation to perceived reality but not subjective importance. Women family members were found to rate the subjective importance of medical-technical competence, identity-oriented approach and socio-cultural approach significantly higher than men did. CONCLUSIONS: Patients with lung cancer and their family members agree in ratings of the perceived reality, but they differ more in ratings of the subjective importance of quality of care. When patients are unable to communicate their preferences, family members' opinions could be used as proxies concerning concrete aspects of quality of care. Concerning more subjective aspects, family members' ratings should be interpreted with precaution, as it could diverge from patients' own opinion. RELEVANCE TO CLINICAL PRACTICE: The perceptions of the importance of different aspects of quality of care were less related to health status than were judgments of quality of care received. This might suggest that the care patients received fulfilled neither the patients' nor family members' expectations, which is an important message to healthcare professionals and which would demand further exploration.

Patients' views on quality of care and attitudes towards re-visiting providers.

PURPOSE: The purpose of this paper is to explore the relationship between patients' service quality perceptions and their attitudes towards visiting the same healthcare provider again. DESIGN/METHODOLOGY/APPROACH: All patients visiting one of 121 (public) primary healthcare centres in a Swedish region between January and March 2005, who were 16 years or older and capable of communicating, were invited to participate. Responses were obtained from 22,170 patients (75 per cent response rate). Patients evaluated service quality using the "Quality from the Patient's Perspective" (QPP; modified short version) questionnaire. Potentially confounding variables such as age, sex, educational level, illness and self-reported health condition were also assessed. Data were analysed through generalised linear mixed effects model analysis and multiple regression analysis respectively, using both individual- and organisational-level (primary healthcare centre) data. FINDINGS: Approximately 10 per cent hesitated about continuing to visit the same care provider. Favourable service quality evaluations made a statistically significant contribution to the odds of reporting no hesitation about re-visiting the same primary healthcare centre. ORIGINALITY/VALUE: Patients' care experiences appear to have an effect on post-care-episode attitudes (and possibly behaviours). It is suggested that effects on care-proximal aspects, such as hesitation about visiting the same provider again, could be an important link to more distal phenomena such as general health status.

COPD patients perspectives at the time of diagnosis: a qualitative study.

AIMS: To gain an understanding of patients perspectives and perceptions of chronic obstructive pulmonary disease (COPD) at the time of diagnosis. METHODS: A qualitative study using grounded theory. Ten patients in primary care in Sweden, newly diagnosed with COPD or with suspected COPD, were interviewed. RESULTS: The analysis created a process model with a core category "Consequences of smoking" and main categories "Shame", "Appearance of symptoms", "Adaptation", "Reflection", and "Action". "Restrictions in physical capacity" was a key indicator of evolving disease and "Getting a diagnosis" was crucial for the patient. CONCLUSIONS: The COPD patient needs a clear diagnosis at an early stage. It is important to seize the opportunity when the presumptive COPD patient is receptive towards support and further action. To detect and support the patient, health professionals must be aware of minor symptoms and underlying mechanisms of possible shame.

Quality of care after ostomy surgery: a perspective study of patients.

Ostomy surgery affects life on a variety of levels. Clinicians need to facilitate the patient's adaptation to life with a stoma and provide information and support to ease the transition. To prospectively assess ostomy patients' perceptions of the quality of care received as well as the importance they ascribe to care conditions, 49 patients from nine Swedish hospitals completed a postoperative "Quality of Care from the Patient's Perspective" questionnaire modified to include stoma care variables. The questionnaire consists of 49 items covering 17 quality dimensions factors that address medical-technical competence, physical-technical conditions, identity-oriented approach, and socio-cultural atmosphere. The modified version contains an additional 13 ostomy-specific items that have demonstrated face validity. Responses to questions were provided using 4-point scales to assess perceived reality and subjective importance. "Medical treatment" received the highest score on the perceived reality scale; "interest in view-of-life," "care-room characteristics," and "participation" received the lowest scores. On the ostomy-specific section, patients were satisfied with most aspects of care received; "where to get advice and support concerning the ostomy" received the highest score. "Talking about sexuality with the ET nurse" received the lowest score on both perceived reality and subjective importance scales. Although the majority of patients regarded most aspects of care as important and were highly satisfied with the care they received before and following their ostomy surgeries, periodic follow-up will most likely enhance satisfaction and long-term follow-up results may differ from those obtained shortly after surgery.