Identifying the prevalence of Parkinson's disease in Denmark using healthcare registries and self-reported survey data.

INTRODUCTION: Existing estimates of PD prevalence in Denmark are lower than those in the rest of Europe and are based on identification via single registries. Hence, are aim was to use a combined registry/self-report survey approach to identify people with PD and also investigate whether using different registry methods led to differences in the accuracy, completeness and characteristics of the identified cohorts. METHODS: This study had a cross-sectional design using routinely collected health registry data to identify adults, ≥18 years of age and resident in Denmark, with PD from either the Danish National Patient (DNP) registry or Danish Prescription Medicines (DPM) registry. Those identified were asked to confirm their PD diagnosis using a national self-report survey. RESULTS: 13,433 people were identified potentially as having PD via the DNP or DPM registry and sent a survey. Of these, 9094 responded (68 %) of which 85 % confirmed they had PD (n = 7763; 194/100,000; 95%CI:7650-7876). When adjusting for non-respondents, assuming an equal rate of confirmation in respondents and non-respondents, estimated Danish PD population was 11,467 (198.4/100,000; 95 % CI:197.2-199.6). Identification of people using those found in both registries led to 98 % confirming they had PD versus using one registry: DNP 93 % and DPM 88 %. No clear differences in sociodemographic characteristics were found between different registry identification methods. CONCLUSIONS: Estimated PD population in Denmark was significantly higher than previous Danish estimates and close to existing estimates in other European countries. The most accurate PD population was identified when including those found in both the DNP and DPM registries.

Experiences of improvement of everyday life following a rehabilitation programme for people with long-term cognitive effects of COVID-19: Qualitative study.

AIM AND OBJECTIVES: To explore challenges in everyday life for people with long-term cognitive effects of COVID-19 and whether a rehabilitation programme contributed to the remedy thereof. BACKGROUND: Healthcare systems around the world need knowledge about acute COVID-19 treatment, long-term effects exerting an impact on peoples' everyday lives, and how to remedy these. DESIGN: This is a qualitative study with a phenomenological approach. METHODS: Twelve people with long-term cognitive effects of COVID-19 participated in a multidisciplinary rehabilitation programme. Individual semi-structured interviews were made. Data were analysed thematically. RESULTS: Three themes and eight sub-themes emerged with respect to everyday life challenges and experiences of the rehabilitation programme. The themes were (1) Personal insight and knowledge, (2) Changed daily routines at home and (3) Coping with working life. CONCLUSION: Participants experienced long-term effects of COVID-19 as cognitive challenges, fatigue and headaches, which affected their everyday lives, that is inability to overcome daily tasks at home and at work, maintaining family roles and relations with relatives. The rehabilitation programme contributed to a vocabulary and insights related to the long-term effects of COVID-19 and the experience of being a different person. The programme contributed to changes in daily routines, organising breaks in everyday life and explaining challenges to family/relatives and the way in which they affected daily routines and their role in the family. In addition, the programme supported several of the participants in finding the right workload and working hours. RELEVANCE TO CLINICAL PRACTICE: We recommend multidisciplinary rehabilitation programmes inspired by cognitive remediation of long-term COVID-19 cognitive effects. Municipalities and organisations could collaborate in the development and completion of such programmes, possibly comprising both virtual and physical elements. This could facilitate access and reduce costs. PATIENT OR PUBLIC CONTRIBUTION: Patients contributed to the conduct of the study by participating in the data collection via interviews. CLINICAL TRIAL REGISTRATION NUMBER: Data collection and processing of data are approved by the Region of Southern Denmark (journal number: 20/46585).

Combined rehabilitation and palliative care interventions for patients with life-threatening diseases - PREGOAL. A scoping review of intervention programme goals.

PURPOSE: WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. METHODS: A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. RESULTS: Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. CONCLUSION: This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions.

There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work.When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions.Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care.

Organizational narratives in rehabilitation-focused dementia care - Negotiating identities, interventions and personhood.

BACKGROUND: Rehabilitation is increasingly being introduced in dementia care but studies highlight extensive heterogeneity in practices, conceptual confusion and divergent perceptions of its relevance across care organizations and national contexts. As this have implications for development of dementia care as well as for people with dementia's access to care it is important to study the organizational narratives and practices in rehabilitation-oriented dementia care organizations. METHODS: The study build on qualitative interviews (individual and group interviews) with health professionals (N = 26) engaged with dementia care and rehabilitation in two Danish municipalities. The interviews were conducted in 2018-2019. The empirical data was analyzed using abductive analysis and theory-based narrative analysis, using Loseke's conceptualizations of and approach to analyzing formula stories. FINDINGS: Four dominant organizational narratives were constructed from the data. Each narrative produced a specific organizational narrative of client identity: the active participant in individualized rehabilitation, the inactive individual benefitting from enhanced social environments, the disengaging self and the vulnerable self. CONCLUSION: Introducing rehabilitation in dementia care may amplify the organizational polyphonic and provide a plurality of organizational identities each expressing different perceptions of personhood and agency for people with dementia. The organizational narratives were negotiated within a specific structural context where national regulation and dominant discourses on economic challenges and ageing gave precedence to some narratives more than others. In Danish elder care, the first narrative is the most influential but risks excluding people with dementia. Instead, rehabilitation in dementia care is positioned within a social and relational perspective, which may silence important discussion of agency and resistance.

Rehabilitation Research in Denmark Between 2001 and 2020: A Scoping Review.

The demand for rehabilitation has increased, and evidence is rapidly growing; however, a rehabilitative health strategy receives less attention than treatment. Knowledge of what is being researched, who are the target groups and who contributes to rehabilitation research is deficient. We did not find any reviews mapping rehabilitation research regarding the research questions. The objective was to identify and synthesize existing scientific evidence on rehabilitation research published by Danish institutions between 2001 and 2021. The research questions to be explored were: Among which study groups has rehabilitation research been published?. Which types of studies on rehabilitation have been published?. Which institutions have been involved in rehabilitation research? Methods: The process was guided according to the Joanna Briggs Institute's (JBI's) scoping review methodology. Four databases were searched. All types of peer-reviewed studies on any target group and rehabilitation setting, with any affiliation to a Danish institution, were eligible to be included. Studies referring to population and the type of design were categorized. Institutions were counted as Danish first authorship. Results: The search revealed 3,100 studies, and following screening 1,779 were included. A total of 24 broad study groups were identified, mostly diagnosis-based health conditions. Musculoskeletal, cancer, and cardiac had 342, 228, and 174 studies, respectively. A total of 1,545 had a Danish first authorship, most of the Danish publications came from hospitals (56.6%) and universities (28.4%). The publication trend showed an almost linear development, with a 10-15% increase during the period. Conclusion: Following screening 1,779 studies were included involving 24 broad study groups. Most categories were diagnosis-based; musculoskeletal, cancer, and cardiac health conditions encompassed most studies. All study designs were represented, and 1/10 were secondary studies. The majority (87%) of studies had a Danish first authorship. The majority of first affiliations were among hospitals followed by universities. A few municipalities were presented although they are yet to have research responsibility. Publication trends showed an increase primarily from 2013. Systematic Review Registration: https://osf.io/, identifier [10.17605/OSF.IO/2AENX].

Goals and Action Plans Across Time and Place-A Qualitative Study Exploring the Importance of "Context" in Person-Centered Rehabilitation.

Background: Person-centeredness is increasingly addressed in relation to rehabilitation interventions. Collaborative goal setting and action plans are key measures in person-centered rehabilitation. There is a lack of knowledge about how person-centered goals and action plans developed away from the patient's everyday life are experienced by patients after discharge. Purpose: This aim of the study is to explore how patients with rheumatic diseases experience the relevance of goals and action plans after discharge from inpatient rehabilitation hospital stay. Methods: Individual narrative interviews were conducted with eight patients with rheumatic diseases, aged between 40 and 60. A convenience sampling strategy was applied. Data collection, analysis and interpretation of data were performed within a phenomenological-hermeneutic framework inspired by Paul Ricoeur's interpretative philosophy. Results: The analysis derived one core theme, "The relevance of goals and action plans is contextual" and three subthemes: "Admission-a protected bubble," "Back home-a harsh reality," and "Need for post-discharge support." Conclusion: This study indicates that the relevance of goals and action plans to patients with rheumatic diseases is context specific. On the basis of the study, it is suggested that the context should be considered in rehabilitation practice, including the social network of the patients. This is in order to support patients in rehabilitation interventions to manage everyday life with disease after discharge to their own homes. Moreover, the concept of context in person-centered rehabilitation should be reconsidered. The study also concludes that there is a need for further development and research in follow up programs, as it is not clear what may constitute an optimal design of follow up support.

Ageing, dementia and the future - ambivalent futurework in rehabilitation-focused dementia care.

Due to its goal-orientation, rehabilitation may be considered a future-oriented practice. As rehabilitation is increasingly recognized as contributing to dementia care it is important to explore how rehabilitation corresponds with the future orientation of older people with dementia.The aim of this study was to explore the futurework of home-dwelling people with mild to moderate dementia in the context of rehabilitation-focused municipal dementia care, that is, their thinking and practices regarding their future and how these correspond with institutionalized practices.The study was conducted as a case-study inspired by the methodology of Institutional Ethnography (IE). The study setting was two Danish municipalities sampled as a paradigmatic case. Eight older people living with early-stage dementia (mean age: 78 years, age range: 65-91) were strategically sampled and each interviewed recurringly within a period of six through 15 months. In total, 29 interviews were completed. An abductive analysis was subsequently conducted based on these interviews.Findings included three dimensions of futurework: Extending the present state into the near future; avoiding being confronted with an anticipated future; and adjusting to decline and preparing for future losses. Based on these findings, a notion of 'ambivalent futurework' is suggested. The futurework of older people did not always correspond with the institutional arrangements in a rehabilitation-focused dementia care. Findings show that the institutional arrangements in dementia care may support as well as challenge the futurework of the participants. Paying attention to the ambivalences of older people living with dementia and recognizing the ambivalent futurework may be essential in rehabilitation-focused dementia care.

Psychometric Properties of the Danish Version of the Questionnaire Professionals' Attitudes towards Addressing Sexual Health (PA-SH-D).

BACKGROUND: Health professionals' attitudes towards addressing sexual health are important to promote patients' sexual health. Therefore, measurement of health professionals' attitudes towards addressing sexual health is essential. AIM: This study aimed to adapt the questionnaire Students' Attitudes towards Addressing Sexual Health (SA-SH-D) to health professionals working with rehabilitation in Danish municipalities and evaluated psychometric properties of the adapted questionnaire: The Danish Version of the Professionals' Attitudes towards Addressing Sexual Health (PA-SH-D). METHODS: The SA-SH-D was adapted to PA-SH-D and a face validity evaluation focusing on phrasing, functionality, perception and relevance was done. In a pilot study, the PA-SH-D was answered by health professionals and internal consistency reliability and floor and ceiling effects were evaluated. OUTCOMES: Face validity included phrasing, functionality, perception and relevance of the items in PA-SH-D, internal consistency with Cronbach's alpha in the total scale and floor and ceiling effects. RESULTS: Face validity of the PA-SH-D was acceptable. The sample size was 52 health professionals working with rehabilitation, the internal consistency reliability (Cronbach's alpha: 0.89 [lower confidence interval {CI}: 0.85]) and floor and ceiling effects (0.0%-13.7%) of the PA-SH-D were acceptable. CLINICAL TRANSLATION: As sexual health is important in human quality of life, the validation of the PA-SH-D is highly valuable as it evaluates health professionals' attitudes towards addressing sexual health, and thereby is able to measure the need for education and training in sexual health and detect changes in attitudes following an educational intervention. STRENGTHS AND LIMITATIONS: Strengths were that the PA-SH-D measures both attitudes and competences and covered a need in clinical practice. The recruitment was broad and we used the work of others to orient this work. Limitations were that this study covered a preliminary psychometric evaluation and a thorough evaluation covering other aspects of psychometry should be done. We used both paper-based and online-based survey which possibly could cause bias. The study had a relatively small sample size. Comparing health professionals to students can be seen as both a limitation and a strength. CONCLUSION: The results in face validity and internal consistency reliability indicate usefulness of the PA-SH-D to measure health professionals' attitudes towards addressing sexual health. Further evaluation of psychometric properties of the PA-SH-D is recommended. Elnegaard CM, Christensen J, Thuesen J, et al. Psychometric Properties of the Danish Version of the Questionnaire Professionals' Attitudes towards Addressing Sexual Health (PA-SH-D). Sex Med 2022;10:100527.

Rehabilitation and palliative care: histories, dialectics and challenges.

Rehabilitation and palliative care are health care fields with separate histories but some recent convergences. Both have been identified as components within universal health coverage and each is the subject of a supportive World Health Assembly Resolution. We draw on the historiography of the two specialties, a recent systematic review of their engagement with each other as described in 62 studies, and critical policy perspectives to examine how rehabilitation and palliative care have been framed as potential partners in care. We examine the changing patient groups served by each field and the organizational forms that combined rehabilitation and palliative care (CRPC) may take. We explore the implications of such collaboration for the underlying goals and values of the two specialties, where each is the subject of changing definitions with differing responsibilities for regulating access to services as well as assuring and documenting quality. We conclude that to be effective CRPC must adapt to the highly segmented and specialized systems in which it is required to operate, recognizing that rehabilitation and palliative care are themselves co-constructors of such segmentation and specialization, but also potential agents for change.

Towards person-centred rehabilitation in dementia - a narrative synthesis.

PURPOSE: The aim of this study was to identify and synthesize person-centred principles and components as described in rehabilitation intervention studies which target home dwelling people with mild to moderate dementia. MATERIALS AND METHODS: A narrative synthesis was carried out which included 19 rehabilitation intervention studies targeting people with mild to moderate dementia. The analysis was guided by an initial program theory about person-centredness in rehabilitation, which was developed for this purpose. RESULTS: Person-centred principles and components were identified and synthesised. Person-centred rehabilitation practice in dementia includes: (1) a focus on the needs, preferences and cultural values of the individual and consideration of his/her life history and biography; (2) the cooperation of professionals and people with dementia, including specific tools and methods such as goal-setting, holistic assessment and methods to activate and empower the individual, and building relationships; (3) organisation and structure. CONCLUSION: Compared to the principles of Kitwood, person-centredness in rehabilitation for people living with dementia also includes goal-setting and empowering principles. There is a need for developing the theoretical and philosophical foundation for person-centredness in rehabilitation in relation to people with dementia.IMPLICATION FOR REHABILITATIONPerson-centredness is a key feature in rehabilitation for people living with dementia.In rehabilitation, person-centredness may entail other principles and components than in dementia care in general.There is a need for developing person-centredness in rehabilitation, both in theory and in practice.

Rehabilitation for People Living with Dementia: A Scoping Review of Processes and Outcomes.

OBJECTIVES: The aim of this scoping review was to map intervention studies of rehabilitation for people living with dementia regarding processes and outcomes, with a particular focus on whether the intervention is person-centred, home-based, or organised adopting a multidisciplinary approach and measures outcomes relating to everyday functioning and well-being. METHODS: A systematic search of electronic databases was conducted in PubMed, CINAHL, PsycINFO, Embase, and Cochrane. Studies from 2005 to November 2018 were collected and screened for relevance and quality. Randomised control trials and prospective cohort trials reporting a statistically significant effect on one or more outcome measures were included. Included studies were mapped according to selected processes and outcome measures. RESULTS: Twenty-six intervention studies were included and mapped. Nineteen of the interventions were person-centred, nine were home-based, and 14 reported a multidisciplinary approach. Twelve of the interventions had activities of daily living as an outcome measure, and 14 had quality of life as an outcome measure. CONCLUSION: Person-centredness appears in most rehabilitation interventions for people living with dementia. Other processes and outcomes are heterogeneously described in the research literature. Rehabilitation programmes can be home-based or take place at a centre. Although not exclusive, the organisation of rehabilitation can be multidisciplinary. Fewer than half of the intervention studies measure the impact on activities of daily living and quality of life. Future guidelines must take into account the weak evidence regarding these aspects.

Evaluation of Person-Centredness in Rehabilitation for People Living with Dementia Is Needed: A Review of the Literature.

BACKGROUND: With an expected increase in the prevalence of dementia, change in care policies and healthcare systems worldwide is needed. Rehabilitation is increasingly recognised as contributing to dementia care. Rehabilitation subscribes to person-centredness, and thus, evaluations of person-centredness in rehabilitation for people living with dementia are relevant in order for healthcare professionals to know how best to practice person-centredness. AIM: The aim of this study was to identify methods of evaluating person-centeredness in rehabilitation for people living with dementia. MATERIALS AND METHODS: Review of the literature using the search terms dementia, person-centredness, and rehabilitation or occupational therapy. Databases searched included: CINAHL, PubMed, Embase, PsycINFO, OTseeker, and SveMed+. The study included peer-reviewed articles from year 2000 to 2018 in Danish, English, Norwegian, or Swedish. RESULTS: Only one academic article met the inclusion criteria. In that article, person-centred practice was evaluated using observation and interview as well as analytical frameworks from person-centred care and occupational therapy. CONCLUSION: Evaluations of person-centred practice in rehabilitation for people living with dementia in peer-reviewed literature are lacking. Evaluations are needed to identify effective strategies to pursue and uphold person-centred care. Given the dearth of research on evaluations of person-centredness in rehabilitation, this article included research in person-centred dementia care in the discussion, which potentially can inspire practice and research of rehabilitation for people living with dementia. To understand the complex nature of person-centredness, a variety of research methodologies of qualitative and quantitative characters are recommended for evaluations.

Systematic assessment of the rehabilitation needs in early stage dementia for home-dwelling people: a scoping review protocol.

REVIEW OBJECTIVE: The objective of this scoping review is to examine and map assessment tools and procedures that are used by health and social care professionals in dementia care for the systematic assessment of the need for rehabilitation in primary and/or secondary healthcare settings for home-dwelling people diagnosed with early stage dementia based on recognized diagnostic criteria.

Implementation between text and work-a qualitative study of a readmission prevention program targeting elderly patients.

BACKGROUND: Numerous studies emphasize the importance of context in implementation. Successful implementation across the health care system depends on conditions and requirements that are often presented to health professionals through text-based materials and might present contradictory expectations to the work of health professionals. In this study, we operationalize institutional context as the text-based material, which from the perspective of health professionals, influence health care work. Via the case of a readmission prevention program for elderly patients, we examine the experiences of health professionals that work with implementation, concerning the contradictions that arise between the demands imposed by program implementation and their everyday work routines, and the role of text-based materials in these contradictions. METHOD: We conducted five focus group interviews among health professionals working at different locations in a single administrative region of Denmark. The 24 health professionals in our study included hospital physicians, hospital nurses, medical secretaries, municipal care managers, registered municipal nurses, and general practitioners. All focus group interviews were transcribed verbatim. Inspired by institutional ethnography, we look into text-based materials, such as written guidelines, if health professionals indicate they are important. RESULTS: The health professionals experience that specific demands of the readmission prevention program come into conflict with the existing demands and daily work routines. Professional resistance to control and the existing digital communication tools create tensions with a program requirement for standardized enrollment of patients to the program. In addition, the striving for autonomy among health professionals and the high level of mono-professional working routines create tension with the program requirements for an additional amount of interdisciplinary work. The different demands are widely mediated by text-based materials such as the existing digital communication tools and the instructions on how to use them, and the official agreement of the role and assignment for Danish GPs. CONCLUSION: Successful implementation of the prevention program is affected by various tensions between the program demands and the existing health care work. Text-based materials mediate the different demands of the institutional context in to health care work and influence the process of implementation.

[Coordinating rehabilitation and palliative care].

There is an increased focus on coordinating rehabilitation and palliative care (CRPC). A systematic Danish literature review on CRPC highlights the following: the main arguments and recommendations for such a coordination, that CRPC might be meaningful for patients throughout the disease trajectory and until the very end of it, that there is a lack of evidence-based research in this area, and that there is a lot of structural, organizational and professional challenges in securing CRPC.