Psychometric Properties of the Verbal and Social Interaction Questionnaire for Psychiatric Outpatient Care (VSI-OP), Staff and Patient Versions.

The aim of this paper is to investigate the psychometric properties of the Verbal and Social Interaction questionnaire for psychiatric outpatient care (VSI-OP) by using a confirmatory factor analysis. A further aim is to present the patient and staff perceptions of the frequency of these interactions in this context. The factor structure of the VSI-OP could be explained by three factors for both the staff and the patient versions. The three factors are: 'Inviting the patient to establish a relationship', 'Showing interest in the patients' feelings, experiences and behaviour' and 'Helping the patients to establish structure and routines in their everyday life'. The two first factors were the most frequently occurring actions according to the staff and the patients.

Improving Transparency to Build Trust in Real-World Secondary Data Studies for Hypothesis Testing-Why, What, and How: Recommendations and a Road Map from the Real-World Evidence Transparency Initiative.

Real-world data (RWD) and the derivations of these data into real-world evidence (RWE) are rapidly expanding from informing healthcare decisions at the patient and health system level to influencing major health policy decisions, including regulatory approvals and coverage. Recent examples include the approval of palbociclib in combination with endocrine therapy for male breast cancer and the inclusion of RWE in the label of paliperidone palmitate for schizophrenia. This interest has created an urgency to develop processes that promote trust in the evidence-generation process. Key stakeholders and decision-makers include patients and their healthcare providers; learning health systems; health technology assessment bodies and payers; pharmacoepidemiologists and other clinical reseachers, and policy makers interested in bioethical and regulatory issues. A key to optimal uptake of RWE is transparency of the research process to enable decision-makers to evaluate the quality of the methods used and the applicability of the evidence that results from the RWE studies. Registration of RWE studies-particularly for hypothesis evaluating treatment effectiveness (HETE) studies-has been proposed to improve transparency, trust, and research replicability. Although registration would not guarantee better RWE studies would be conducted, it would encourage the prospective disclosure of study plans, timing, and rationale for modifications. A joint task force of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the International Society for Pharmacoepidemiology (ISPE) recommended that investigators preregister their RWE studies and post their study protocols in a publicly available forum before starting studies to reduce publication bias and improve the transparency of research methods. Recognizing that published recommendations alone are insufficient, especially without accessible registration options and with no incentives, a group of experts gathered on February 25 and 26, 2019, in National Harbor, Maryland, to explore the structural and practical challenges to the successful implementation of the recommendations of the ISPOR/ISPE task force for preregistration. This positioning article describes a plan for making registration of HETE RWE studies routine. The plan includes specifying the rationale for registering HETE RWE studies, the studies that should be registered, where and when these studies should be registered, how and when analytic deviations from protocols should be reported, how and when to publish results, and incentives to encourage registration. Table 1 summarizes the rationale, goals, and potential solutions that increase transparency, in addition to unique concerns about secondary data studies. Definitions of terms used throughout this report are provided in Table 2.

Improving transparency to build trust in real-world secondary data studies for hypothesis testing-Why, what, and how: recommendations and a road map from the real-world evidence transparency initiative.

Real-world data (RWD) and the derivations of these data into real-world evidence (RWE) are rapidly expanding from informing healthcare decisions at the patient and health system level to influencing major health policy decisions, including regulatory approvals and coverage. Recent examples include the approval of palbociclib in combination with endocrine therapy for male breast cancer and the inclusion of RWE in the label of paliperidone palmitate for schizophrenia. This interest has created an urgency to develop processes that promote trust in the evidence-generation process. Key stakeholders and decision-makers include patients and their healthcare providers; learning health systems; health technology assessment bodies and payers; pharmacoepidemiologists and other clinical reseachers, and policy makers interested in bioethical and regulatory issues. A key to optimal uptake of RWE is transparency of the research process to enable decision-makers to evaluate the quality of the methods used and the applicability of the evidence that results from the RWE studies. Registration of RWE studies-particularly for hypothesis evaluating treatment effectiveness (HETE) studies-has been proposed to improve transparency, trust, and research replicability. Although registration would not guarantee better RWE studies would be conducted, it would encourage the prospective disclosure of study plans, timing, and rationale for modifications. A joint task force of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the International Society for Pharmacoepidemiology (ISPE) recommended that investigators preregister their RWE studies and post their study protocols in a publicly available forum before starting studies to reduce publication bias and improve the transparency of research methods. Recognizing that published recommendations alone are insufficient, especially without accessible registration options and with no incentives, a group of experts gathered on February 25 and 26, 2019, in National Harbor, Maryland, to explore the structural and practical challenges to the successful implementation of the recommendations of the ISPOR/ISPE task force for preregistration. This positioning article describes a plan for making registration of HETE RWE studies routine. The plan includes specifying the rationale for registering HETE RWE studies, the studies that should be registered, where and when these studies should be registered, how and when analytic deviations from protocols should be reported, how and when to publish results, and incentives to encourage registration. Table 1 summarizes the rationale, goals, and potential solutions that increase transparency, in addition to unique concerns about secondary data studies. Definitions of terms used throughout this report are provided in Table 2.

A day in the life of people with severe mental illness living in supported housing.

BACKGROUND: People with severe mental illness (SMI) living in supported housing (SH) struggle in everyday life and we currently lack a comprehensive body of knowledge concerning how the residents experience their day. This paper aimed to gain knowledge about how people with SMI describe a day in SH in Sweden, in particular the activities they most frequently engage in and how they experience what they do in or outside their home. Furthermore, it is important to gain knowledge of which activities motivate residents to leave the housing facility and to participate in the community. This new knowledge can help staff to encourage a recovery process among the residents. METHODS: One hundred thirty-three people living in SH completed a time-use diary and a mixed-methods approach was applied, including calculations of what activity that was most frequently performed and a manifest content analysis addressing experiences of activity. RESULTS: The residents had a low activity level and were often alone. Approximately one-half of the reported activities were performed in their own apartments, and generally unaccompanied. A quarter of the activities were performed in the common areas and a further quarter outside the SH. The most frequently performed activities were quiet and tranquil ones, e.g. listening to music and resting. Doing errands and group activities with staff and residents were the main activities that motivated leaving the facility. The participant experience of a day is presented in three categories: "Experiences of chosen and enforced togetherness and overcoming loneliness", "Environmental change and emotional balance can generate activity", and "Met and unmet needs for support, friendship and security". CONCLUSIONS: The residents were generally satisfied with their quiet and tranquil lifestyle and appeared to demand little of life, which may relate to previous experiences of institutional life and can constitute a challenge for staff. The findings highlight experiences that can help to improve SH. Services need to support individually adjusted contextual stimuli and individualize the support to help residents find a good balance and motivate them to be active in and outside SH, which can support a recovery process.

Navigating in a Misty Landscape - Perceptions of Supporting a Relative Residing in Supported Housing for People with a Psychiatric Disability.

The aim was to explore informal carers' perceptions of supporting the everyday life of a relative who has a psychiatric disability and resides in supported housing (SH). A qualitative study based on interviews with 12 informal carers was performed, and the data was analyzed with qualitative content analysis. The theme "Navigating in a misty landscape when striving to support a relative with a psychiatric disability" was identified, encompassing four categories pertaining to residents' needs, collaboration, environmental issues and the carer's situation. SH services can be enhanced by addressing informal carers' experiences and developing greater collaboration involving informal carers, residents and staff.

Residents' Perceptions of Quality in Supported Housing for People with Psychiatric Disabilities.

The residents' perspective of the quality of housing support for people with psychiatric disabilities living in congregate supported housing has been studied and a comparison has been made with the findings from those from a previous study in ordinary housing with outreach support. One-hundred and seventy-eight residents from 27 supported housing facilities in eight Swedish municipalities completed the Quality of Psychiatric Care-Housing (QPC-H) instrument. The highest quality ratings were found for: Secluded Environment, Encounter and Support, while Participation, Housing Specific and Secure Environment were rated at lower levels. Despite relatively high ratings, a majority of items did not attain the 80% cutoff point deemed as defining satisfactory quality of service. The residents in ordinary housing with outreach support rated higher levels for the majority of the QPC-H dimensions in comparison with those in supported housing. A conclusion is that the quality of care in supported housing facilities has a number of deficiencies that need to be addressed. Supported housing is generally rated as having a lower quality of care than in ordinary housing with outreach support. Suggestions for the content of staff training are made based on the results.

Residents' perceptions of the most positive and negative aspects of the housing situation for people with psychiatric disabilities.

The major aim of the present study was to explore what people with psychiatric disabilities, living in two different types of housing, consider to be the best and the worst in their housing situation. A secondary aim was to explore to what extent additional questions to a questionnaire with a free-response format can provide complementary information to the previous knowledge in the field. The content analysis revealed that the physical attributes were of great significance for the residents in ordinary housing, while both psychosocial aspects and physical attributes were important for those living in supported housing. When providing good housing solutions for people with psychiatric disabilities, attention needs to be given to these aspects by politicians, policymakers as well as by nursing staff.

Wellbeing, activity and housing satisfaction - comparing residents with psychiatric disabilities in supported housing and ordinary housing with support.

BACKGROUND: The home is imperative for the possibilities for meaningful everyday activities among people with psychiatric disabilities. Knowledge of whether such possibilities vary with type of housing and housing support might reveal areas for improved support. We aimed to compare people with psychiatric disabilities living in supported housing (SH) and ordinary housing with support (OHS) regarding perceived well-being, engaging and satisfying everyday activities, and perceived meaning of activity in one's accommodation. The importance of these factors and socio-demographics for satisfaction with housing was also explored. METHODS: This naturalistic cross-sectional study was conducted in municipalities and city districts (n = 21) in Sweden, and 155 SH residents and 111 OHS residents participated in an interview that included both self-reports and interviewer ratings. T-test and linear regression analysis were used. RESULTS: The SH group expressed more psychological problems, but better health, quality of life and personal recovery compared to the OHS residents. The latter were rated as having less symptom severity, and higher levels of functioning and activity engagement. Both groups rated themselves as under-occupied in the domains of work, leisure, home management and self-care, but the SH residents less so regarding home management and self-care chores. Although the groups reported similar levels of activity, the SH group were more satisfied with everyday activities and rated their housing higher on possibilities for social interaction and personal development. The groups did not differ on access to activity in their homes. The participants generally reported sufficient access to activity, social interaction and personal development, but those who wanted more personal development in the OHS group outnumbered those who stated they received enough. Higher scores on satisfaction with daily occupations, access to organization and information, wanting more social interaction, and personal recovery predicted high satisfaction with housing in the regression model. CONCLUSION: The fact that health, quality of life and recovery were rated higher by the SH group, despite lower interviewer-ratings on symptoms and level of functioning, might partly be explained by better access to social interaction and personal development in the SH context. This should be acknowledged when planning the support to people who receive OHS.

Residents' View of Quality in Ordinary Housing with Housing Support for People with Psychiatric Disabilities.

The aim of the present study was to investigate the quality of housing support provided in housing services for people with psychiatric disabilities living in ordinary housing with housing support from the residents' perspective, by using the QPC-H instrument. A sample of 174 residents in ordinary housing, receiving housing support from 22 housing support services in nine Swedish municipalities, participated in this study. The results show that the quality of psychiatric care in housing services was mainly rated highly as measured with the QPC-H instrument. The dimensions Encounter and Secluded Environment were the aspects that were rated as the two with the highest quality of housing service. The dimensions Participation and Secure Environment were rated as those with the lowest quality. There were more residents who totally disagreed with the statements in the dimensions Participation and Housing Specific than in the other dimensions. The perceived lower quality in Encounter, Participation, Support and the Housing Specific dimensions was associated with a low frequency of psychiatric outpatient clinic contacts. A conclusion is that the support staff could be more observant regarding the residents' need for support and also talk more with them about what could be done to assist them. It also seems important that the support staff discuss with the residents regarding how they can help them to feel more secure in their accommodation.

Health-Related Quality of Life in Patients with Idiopathic Pulmonary Fibrosis.

PURPOSE: Idiopathic pulmonary fibrosis (IPF) produces symptoms and activity limitations that impair health-related quality of life (HRQOL). The Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®)) includes measures of self-reported health and HRQOL for a range of conditions. This study evaluated the HRQOL of individuals with IPF using PROMIS measures and examined associations between HRQOL and key symptoms or supplemental oxygen need. METHODS: Individuals who reported being told by a doctor that they have IPF completed an online battery of measures at baseline and 7-10 days later (for test-retest reliability). Measures included a brief survey of demographic and health-related questions, the PROMIS-29 profile, the Modified Medical Research Council Dyspnea Scale (MMRC), PROMIS dyspnea severity short form, A Tool to Assess Quality of life in IPF (ATAQ-IPF) and one cough item from the Functional Assessment of Chronic Illness Therapy (FACIT). RESULTS: 220 individuals were included in the final sample. Except for sleep disturbance, all PROMIS domain scores significantly (p < .01) differed by MMRC level. Supplemental oxygen users were more impaired than non-users in fatigue, physical function, and social role participation (p < 0.01). The test-retest reliability was acceptable to excellent (>0.7) for all scales, but was lower for sleep disturbance (0.64). CONCLUSIONS: People with IPF report substantial deficits in HRQOL across a range of PROMIS domains, and deficits vary by dyspnea and cough severity. These deficits warrant monitoring in clinical practice and consideration when investigating new therapies. Further research is required to further evaluate the psychometric performance of the PROMIS-29 in IPF.

Measuring quality in community based housing support - the QPC-H instrument.

Purpose - The purpose of this paper is to test the psychometric properties and dimensionality of the instrument Quality in Psychiatric Care-Housing (QPC-H) and briefly describe the residents' perception of quality of housing support. Design/methodology/approach - A sample of 174 residents from 22 housing support services in nine Swedish municipalities participated in the study. Confirmatory factor analysis (CFA) revealed that the QPC-H consisted of six dimensions and had a factor structure largely corresponding to that found among other instruments in the Quality in Psychiatric Care (QPC) family of instruments. Findings - CFA revealed that the QPC-H consisted of six dimensions and had a factor structure largely corresponding to that found among other instruments in the QPC family of instruments. The internal consistency of the factors was acceptable except in the case of secure and secluded environment, probably due to few numbers of items. With this exception, the QPC-H shows adequate psychometric properties. Social implications - The residents' ratings of quality of housing service were generally high; the highest rating was for secluded environment and the lowest for participation. This dimension would thus seem to indicate an important area for improvement. Originality/value - The QPC-H includes important aspects of residents' assessment of quality of housing service and offers a simple and inexpensive way to evaluate housing support services from the residents' perspective.

Satisfaction with housing and housing support for people with psychiatric disabilities.

The aim of this study was to investigate the degree of satisfaction with housing and housing support for people with psychiatric disabilities in Sweden. A total of 370 residents, in supported housing and in ordinary housing with housing support, completed a new questionnaire and reported a high degree of overall satisfaction, but many of them wanted to move somewhere else. Differences were found between the two different types of housing concerning satisfaction with housing support, social life and available choices. Security and privacy, as well as other's influence on the choice of residential area and dwelling proved to be important predictors for satisfaction.

Existential vulnerability can be evoked by severe difficulties with initial breastfeeding: a lifeworld hermeneutical single case study for research on complex breastfeeding phenomena.

Many mothers initiate breastfeeding, but some of these experience difficulties. This study has two aims in order to contribute to the development of optimal care for these mothers: firstly to explain and understand the existential meanings of one mother's severe initial breastfeeding difficulties and how these meanings affected her continued breastfeeding and secondly, to reflect on a method for applying lifeworld hermeneutics to research on complex breastfeeding phenomena. This is an approach that acknowledges and focuses on the concrete and lived existence and what it means for humans. Within this approach, humans are understood as whole human beings interacting in the world. The study was conducted using lifeworld interviews with Anna, focusing on meanings of her difficult lived experience of initial breastfeeding. The existential interpretation suggests that such an experience can evoke existential vulnerability, a vulnerability that becomes evident in shameful feelings, such as dislike of breastfeeding, aversion to the milk-producing body and anger towards the child. Anna continued breastfeeding as a way to rid herself of the shame, hoping to be confirmed as a good mother. Such an experience may have negative consequences for the mother-child relationship and it can create fear for future breastfeeding. This study concludes that carers should be aware of individual existential dimensions for breastfeeding mothers.

Psychometric evaluation of a Swedish version of Minneapolis-Manchester quality of life-youth form and adolescent form.

BACKGROUND: It has become important to measure long-term effects and quality of life in survivors of childhood cancer. The Minneapolis- Manchester Quality of Life (MMQL) instrument has been proven to better capture the quality of life (QoL) perspective of health than other instruments. The instrument has age appropriate versions and is therefore favourable for longitudinal studies of QoL of children surviving from cancer. The aim of this study was to evaluate the psychometric properties of the Swedish version of MMQL-Youth Form and the Adolescent Form focusing on: 1) face and content validity 2) the internal consistency and 3) the test-retest reliability. METHODS: The sample consisted of 950 pupils (11-16 years old) from 7 schools in the western Sweden who completed the questionnaire. For the test-retest evaluation 230 respondents completed the questionnaire two weeks later. RESULTS: Face and content validity was supported and internal consistency was found to be acceptable for the total scale for both the MMQL-Youth Form (8-12 years of age) and the Adolescent Form (13-20 years of age). Test-retest reliability for the MMQL-Youth Form was moderate for 50% of the items and good for the remaining. For the MMQL-Adolescent Form the test-retest showed moderate or good agreement for 80% of the items and fair for 20%. CONCLUSIONS: The result indicated that the Swedish version of the MMQL-Youth Form and Adolescent Form was valid and reliable in a sample of healthy children in a Swedish context. It is recommended to test the instrument among diverse samples of children such as survivors of childhood cancer in order to validate its usefulness in research and clinical settings.

The influence of physical environmental qualities on the social climate of supported housing facilities for people with severe mental illness.

The study investigates the extent to which the perceived physical environmental quality of housing facilities for people with severe mental illness accounts for perceived social environmental quality. Twenty facilities were assessed by people with psychiatric disabilities (residents), staff, and experts with regard to the physical environmental aspects of visual pleasantness, indirect environmental effects, overall physical quality, and the social environmental indicator of social relationship. The results suggest that residents' and staff's physical environmental quality perception accounts for social relationship quality perception, whereas experts' environmental assessment does not. Moreover, the staff reported a more positive social relationship perception than the residents.

Validity and reliability of a Swedish questionnaire for assessing satisfaction with housing and housing support for persons with psychiatric disabilities.

The aim of this study was to investigate the reliability and validity of a questionnaire for studying satisfaction with housing and housing support for people with psychiatric disabilities. Most items were gathered from English language questionnaires. These were translated and adapted to a Swedish context and items concerning housing support were added. Two studies were conducted. The first, a test-retest reliability analysis, was performed in a pilot study with 53 participants; in the second study, which had 370 participants, a five factor solution with good internal consistency emerged. Further development of the questionnaire is discussed.

Staff's experiences of a person-centered health education group intervention for people with a persistent mental illness.

Patient education in mental health care is a conventional intervention to increase patients' knowledge about their illness and treatment. A provider-centered focus in patient education may put patients in a passive role, which can counteract their processes of recovery. There is an increasing emphasis on recovery-oriented practice, an approach that is aligned with the service user perspective, but little is known about health care staff's perspectives on person-centered mental health care. A qualitative approach was used to describe staff's experiences of being group leaders in a person-centered health education intervention in municipal services for persons with a persistent mental illness. The analysis of staff experiences revealed three core categories: (1) implications of the division of responsibility among local authorities, (2) awareness of facilitating factors of growth, and (3) the meaning of dialogue. These formed the theme Preconditions for Person-Centered Care. Further research is required to explore larger economic, political, and social structures as backdrops to person-centered mental health care, from the perspective of service users, families, health professionals, and the community at large.

Where can I find consolation? A theoretical analysis of the meaning of consolation as experienced by job in the Book of Job in the Hebrew Bible.

The aim of the study was to explore the meaning of consolation as experienced by Job in the Book of Job and as presented in literature and how consolation relates to suffering and care. The study's theoretical design applied Ricoeur's view on phenomenology and hermeneutics. The resulting themes were as follows: consolation that is present, that originates in confrontation, that keeps suffering at a distance, that does not alleviate suffering, that originates in experience from giving comfort, and that facilitates a change of perspective. The authentic and caring consolation accepts the sufferer's incomprehensible "otherness" but however provides no answers about how to console.

The perspectives of patients, nursing students and supervisors on "the caring-learning space" - a synthesis of and further abstracton of previous studies.

The aim was to describe and gain a greater understanding of the phenomenon "caring-learning space" based on the perspectives of patients, nursing students, and supervisors in clinical practice contexts.A general structure of the phenomenon "caring-learning space" was created based on essential structures from five empirical studies. The analysis is based on a reflective lifeworld research approach (RLR).The "caring-learning" space shows itself in terms of interpersonal relationships between patients, students, supervisors, and other actors in the care environment. It is first when the learning space is accepted as a part of caring, that a "caring-learning space" is created. A flexibility and a receptivity are seen where the learning is allowed to become visible and be integrated in the caring processes when caring and learning to interact.A caring-learning space is established by the patient being the focal point, but also a co-creator in caring as well as learning regardless of her/his health status. This entails that the "caring-learning space" exists when patients, students, supervisors and other healthcare professionals interact based on their ability and role in the space.

Opportunities and barriers for occupational engagement among residents in supported housing.

Opportunities and barriers for occupational engagement among residents in supported housing. BACKGROUND: Research shows that people with psychiatric disabilities view supported housing (SH) as a possibility for social contact, but also as entailing a risk of deprived self-determination. There is, however, little research on the target group's engagement in everyday occupations. AIM: To explore SH residents' opportunities and barriers for occupational engagement. MATERIALS AND METHODS: Sixteen participants were interviewed, and data was analysed using content analysis. RESULTS: An overarching theme, Struggling to create meaning and seeking affection, and three underlying categories, emerged. Finding meaning through self-chosen occupations and support focussed on receiving support, doing self-chosen occupations, and having social contacts. Feeling neglected and insecure limits engagement in occupations was related to feelings of not being seen by staff, and insecurity, which hampered daily life. The third theme was Having a negative self-image and low level of ability hinders an active life. CONCLUSION: Residents' self-view and ability to create an inner drive for being active was important for occupational engagement, which was linked to social connectedness. Occupational based interventions and a personal recovery approach is warranted in order to facilitate needs for meaningful occupations. SIGNIFICANCE: The results from the study can be used to further develop optimal support within SH units.