A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study.

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study.

BACKGROUND: Over the past few years, online record access (ORA) has been established through secure patient portals in various countries, allowing patients to access their health data, including clinical notes ("open notes"). Previous research indicates that ORA in mental health, particularly among patients with severe mental illness (SMI), has been rarely offered. Little is known about the expectations and motivations of patients with SMI when reading what their clinicians share via ORA. OBJECTIVE: The aim of this study is to explore the reasons why patients with SMI consider or reject ORA and whether sociodemographic characteristics may influence patient decisions. METHODS: ORA was offered to randomly selected patients at 3 university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. Within the framework of a mixed methods evaluation, qualitative interviews were conducted with patients who chose to participate in ORA and those who declined, aiming to explore the underlying reasons for their decisions. The interviews were transcribed and analyzed using thematic analysis. Sociodemographic characteristics of patients were examined using descriptive statistics to identify predictors of acceptance or rejection of ORA. RESULTS: Out of 103 included patients, 58% (n=60) wished to read their clinical notes. The reasons varied, ranging from a desire to engage more actively in their treatment to critically monitoring it and using the accessible data for third-party purposes. Conversely, 42% (n=43) chose not to use ORA, voicing concerns about possibly harming the trustful relationship with their clinicians as well as potential personal distress or uncertainty arising from reading the notes. Practical barriers such as a lack of digital literacy or suspected difficult-to-understand medical language were also named as contributing factors. Correlation analysis revealed that the majority of patients with depressive disorder desired to read the clinical notes (P<.001), while individuals with psychotic disorders showed a higher tendency to decline ORA (P<.05). No significant group differences were observed for other patient groups or characteristics. CONCLUSIONS: The adoption of ORA is influenced by a wide range of motivational factors, while patients also present a similar variety of reasons for declining its use. The results emphasize the urgent need for knowledge and patient education regarding factors that may hinder the decision to use ORA, including its practical usage, its application possibilities, and concerns related to data privacy. Further research is needed to explore approaches for adequately preparing individuals with SMI to transition from their inherent interest to active engagement with ORA. TRIAL REGISTRATION: German Clinical Trial Register DRKS00030188; https://drks.de/search/en/trial/DRKS00030188.

Protecting mass-gathering events in a pandemic with testing tracks and transparent information: an experimental study with festival guests.

Objective. To enable future open-air festivals during a pandemic, model festivals tested restricted access and behavioural rules to prevent SARS-CoV-2 transmissions. However, the uptake of health-protective measures depends on informed acceptance, meaning people are more likely to follow measures if they understand their effectiveness and related disease risks. Design and main outcome measures. With a series of online surveys, we studied risk perceptions of 6,500 festival guests and the association of perceived effectiveness of protective behaviours with reported compliance. In a scenario-based online experiment (N = 1,958) among festival guests, we tested the effect of informing transparently about the risk-reducing potential of protective measures at festivals on the intention to attend hypothetical events. Results. We found that guests tended to overestimate infection risks while still perceiving them as low. Self-reported mask wearing and distancing at and around the festivals could not be associated with the understanding of the measures' effectiveness. However, in addition to protective measures themselves, providing transparent information about their absolute risk-reducing effect increased intentions to attend festivals that employ varying protective measures. Conclusion. Our findings suggest that the acceptance of protected festivals can be influenced by transparent information about the effectiveness of protective measures. This calls for further research on evidence-based public health communications to improve their impact.

Interaction of panic and episodic breathlessness among patients with life-limiting diseases: a cross-sectional study.

BACKGROUND: Episodic breathlessness is often accompanied by panic. A vicious cycle of breathlessness-panic-breathlessness leads to emergencies with severe breathlessness and/or fear of dying. However, the interaction between episodic breathlessness and panic is poorly understood. Thus, the aim is a better understanding of the interaction between panic and episodic breathlessness to develop appropriate support for patients suffering from this symptom. METHODS: Patients suffering from episodic breathlessness due to life-limiting diseases answered questions on the characteristics of episodic breathlessness and panic-spectrum psychopathology, including underlying mechanisms. Using the Patient Health Questionnaire and the Structured Clinical Interview for DSM-IV Diagnoses (SCID), patients were screened for panic disorder. An open-ended question captured the patients' descriptions of panic during breathlessness episodes. RESULTS: Forty-six patients [52% women, mean age =66 years; standard deviation (SD) 7.3 years] provided information: 61% suffered from panic during the entire breathlessness episode, 39% experienced panic in every episode, and 25% were diagnosed with panic disorder. Exploratory data analysis was conducted. Patients with high scores in breathlessness catastrophizing thoughts experienced more panic in a breathlessness episode (P<0.001) and considered themselves more panic than low-scorers (P=0.024). There was a significant indirect effect of episodic breathlessness intensity on the panic experienced in an episode, and this effect was mediated by catastrophizing thoughts regarding breathlessness (b=0.164; 95% CI: 0.105, 0.222). Patients described in the open-ended question experiencing only panic or breathlessness, or a combination of both. Some patients managed to differentiate panic from episodic breathlessness, and used strategies to avoid panic in an episode. CONCLUSIONS: Research on treatment options for episodic breathlessness should not only focus on panic in breathlessness episodes, but also on underlying mechanisms such as catastrophizing thoughts, as they aggravate the burden.

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

BACKGROUND: Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. METHODS: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. RESULTS: Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. CONCLUSIONS: The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. TRIAL REGISTRATION: The Graduate School and Faculty of Medicine Kyoto University (R1924-1).

Design of a Patient-Accessible Electronic Health Record System in Mental Health.

Patient accessible Electronic Health Records (PAEHRs) are increasingly implemented internationally. However, studies carried out in the mental health care setting report several practical and ethical challenges when introducing PAEHRs. In this paper we aim to explore the requirements of a PAEHR system in mental health. As part of a participatory design process, we collected qualitative data from service users and staff in a rural mental health day clinic setting, which can be summarized in the following themes: I) Function and way of the documentation; II) Impact on Treatment; III) Concerns about PAEHRs; IV) time of access to PAEHRs; V) Different views on what to share; VI) Access, Data Privacy and Special Features. Our study uncovered the complexity and special requirements and barriers to the design of PAEHR in mental health. While we are in an early stage of our study, we will continue this iterative process and adapt the PAEHR system to the specific needs of the users and domains.

The experience of episodic breathlessness from the perspective of informal caregivers: a qualitative interview study.

BACKGROUND: Episodic breathlessness is a common form of chronic breathlessness that is highly distressing for patients with diseases such as chronic obstructive pulmonary disease (COPD) and lung cancer in advanced stages. Little is known about the experiences of informal caregivers who care for patients with episodic breathlessness. The present study aims to explore and describe the experiences and coping strategies of informal caregivers who deal with this challenging condition. METHODS: This is a qualitative study based on semi-structured in-depth interviews with informal caregivers of patients suffering from episodic breathlessness. The interviews were recorded, transcribed verbatim, and analyzed using Mayring's qualitative content analysis. RESULTS: Thirteen informal caregivers were interviewed. The results suggest that the distress patients often experience during episodic breathlessness causes concern and anxiety among most informal caregivers. Particularly stressful for them is their own helplessness and uncertainty, especially when episodic breathlessness occurs for the first time. Over time, all informal caregivers interviewed had developed strategies to cope with the patients' episodic breathlessness. These strategies can be divided into two categories: (I) strategies directed at the patient to provide appropriate support during episodic breathlessness, and (II) strategies aimed at coping with the caregiver's own emotional burden. Despite these strategies, the need for professional support for informal caregivers often remains unmet, especially during the initial onset of episodic breathlessness. CONCLUSIONS: Informal caregivers of patients with chronic breathlessness need support and advice on how to better cope with episodic breathlessness. Both patient and caregiver support need to be part of a comprehensive approach, e.g., as part of a breathlessness service.

Only I Know Now, of Course, How to Deal With it, or Better to Deal With it: A Mixed Methods Phase II Study of a Cognitive and Behavioral Intervention for the Management of Episodic Breathlessness.

CONTEXT: Episodic breathlessness is characterized by increased breathlessness intensity, and it is burdensome for patients. A vicious cycle of breathlessness-anxiety/panic-breathlessness leads to emergencies that can rarely be alleviated by drugs. Non-pharmacological interventions seem to be beneficial: Can a brief cognitive and behavioral intervention help patients to better manage episodic breathlessness? OBJECTIVES: To evaluate the feasibility, safety, acceptability, and potential effects of a brief cognitive and behavioral intervention for the management of episodic breathlessness. METHODS: Between February 2019 and February 2020, 49 patients with life-limiting diseases suffering from episodic breathlessness were enrolled in the single-arm phase II study. The baseline assessment was followed by the one- to two-hour intervention. In weeks two, four, and six after the intervention, the outcomes (main outcome of potential effects: mastery of breathlessness) were assessed, and in week six, a qualitative interview, and the final assessment took place. A mixed-methods approach was used to evaluate mainly the feasibility, including interviewing informal carers. RESULTS: 46/49 patients (24 female; 36 with COPD; mean age: 66.0 years) participated in the baseline assessment, 38 attended the intervention, 32 completed the final assessment, and 22 were interviewed. Study procedures and the intervention were feasible and mainly well accepted and patients did not experience burdens caused by it (28/32). In the interviews, patients described a positive change in their competencies in managing episodic breathlessness and feelings of anxiety during the episode. Mastery of breathlessness improved after the intervention. CONCLUSION: The brief cognitive and behavioral intervention and the study procedures are feasible, safe, and well accepted. We can describe a change for better management of episodic breathlessness in patients after the intervention, still, this needs to be evaluated in a Phase III trial for inclusion in the management of episodic breathlessness.

Study protocol of a systematic review and qualitative evidence synthesis using two different approaches: Healthcare related needs and desires of older people with post-stroke aphasia.

INTRODUCTION: Stroke is a frequent disease in the older population of Western Europe with aphasia as a common consequence. Aphasia is known to impede targeting treatment to individual patients' needs and therefore may reduce treatment success. In Germany, the postacute care of patients who had stroke is provided by different healthcare institutions of different sectors (rehabilitation, nursing and primary care) with substantial difficulties to coordinate services. We will conduct two qualitative evidence syntheses (QESs) aiming at exploring distinct healthcare needs and desires of older people living with poststroke aphasia. We thereby hope to support the development of integrated care models based on needs of patients who are very restricted to communicate them. Since various methods of QESs exist, the aim of the study embedding the two QESs was to determine if findings differ according to the approach used. METHODS AND ANALYSIS: We will conduct two QESs by using metaethnography (ME) and thematic synthesis (ThS) independently to synthesise the findings of primary qualitative studies. The main differences between these two methods are the underlying epistemologies (idealism (ME) vs realism (ThS)) and the type of research question (emerging (ME) vs fixed (ThS)).We will search seven bibliographical databases. Inclusion criteria comprise: patients with poststroke aphasia, aged 65 years and older, studies in German/English, all types of qualitative studies concerning needs and desires related to healthcare or the healthcare system. The protocol was registered in the International Prospective Register of Systematic Reviews, follows Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols guidelines and includes three items from the Enhancing Transparency in Reporting the synthesis of Qualitative Research checklist. ETHICS AND DISSEMINATION: Ethical approval is not required. Findings will be published in a peer-reviewed journal and presented on national conferences.

Development of a Brief Cognitive and Behavioral Intervention for the Management of Episodic Breathlessness-A Delphi Survey With International Experts.

CONTEXT: Episodic breathlessness is characterized by a severe worsening of breathlessness intensity that goes beyond usual fluctuations. Episodes are usually short; therefore, nonpharmacological strategies (cognitive and behavioral) seem most promising to be beneficial. Which strategies-delivered separately or in combination-might be most effective and feasible remains unclear. OBJECTIVES: The Delphi survey selects and determines different nonpharmacological strategies for coping with episodic breathlessness to develop a brief cognitive and behavioral intervention for the management of episodic breathlessness. METHODS: Using an online Delphi survey comprising three rounds, international, multidisciplinary experts in breathlessness summarized and determined cognitive and behavioral strategies. The a priori target agreement for close-ended questions was 70%. RESULTS: Experts (n = 41/87; n = 45/85; n = 36/85) agreed on 15 of the 31 cognitive and behavioral strategies. Based on the panellists' opinion, the final version of the cognitive and behavioral intervention comprised the following characteristics: individually tailored intervention, a high proportion of communication, short duration, the involvement of carers, and use of the Breathing, Thinking, Functioning Model of Spathis et al. Consensus upon the delivery of the subsequent strategies within the intervention was reached: handheld fan, forward lean, diaphragmatic breathing, distraction, pursed lips breathing, long breaths out, and relaxation training. CONCLUSION: Using the consented nonpharmacological strategies, a brief cognitive and behavioral intervention was developed that balances between individualization and standardization of the intervention.

Palliative Care in Advanced Dementia.

Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.

Measuring attitudes towards the dying process: A systematic review of tools.

BACKGROUND: At the end of life, anxious attitudes concerning the dying process are common in patients in Palliative Care. Measurement tools can identify vulnerabilities, resources and the need for subsequent treatment to relieve suffering and support well-being. AIM: To systematically review available tools measuring attitudes towards dying, their operationalization, the method of measurement and the methodological quality including generalizability to different contexts. DESIGN: Systematic review according to the PRISMA Statement. Methodological quality of tools assessed by standardized review criteria. DATA SOURCES: MEDLINE, PsycINFO, PsyndexTests and the Health and Psychosocial Instruments were searched from their inception to April 2017. RESULTS: A total of 94 identified studies reported the development and/or validation of 44 tools. Of these, 37 were questionnaires and 7 alternative measurement methods (e.g. projective measures). In 34 of 37 questionnaires, the emotional evaluation (e.g. anxiety) towards dying is measured. Dying is operationalized in general items ( n = 20), in several specific aspects of dying ( n = 34) and as dying of others ( n = 14). Methodological quality of tools was reported inconsistently. Nine tools reported good internal consistency. Of 37 tools, 4 were validated in a clinical sample (e.g. terminal cancer; Huntington disease), indicating questionable generalizability to clinical contexts for most tools. CONCLUSION: Many tools exist to measure attitudes towards the dying process using different endpoints. This overview can serve as decision framework on which tool to apply in which contexts. For clinical application, only few tools were available. Further validation of existing tools and potential alternative methods in various populations is needed.

Needs of people with advanced dementia in their final phase of life: A multi-perspective qualitative study in nursing homes.

BACKGROUND: People with advanced dementia present an important target group for palliative care. They suffer a range of symptoms, and their verbal communication abilities are highly restricted. At present, little is known about their needs in the final phase of life. AIM: To identify the needs of people with advanced dementia in their final phase of life and to explore the aspects relevant to first recognize and then meet these needs. DESIGN: Multi-perspective qualitative study using grounded theory methodology conducting group discussions, individual interviews, and participant observation. SETTING/PARTICIPANTS: The study encompassed nursing homes and involved health professionals, relatives, and residents with advanced dementia. RESULTS: Data were collected in six nursing homes. Nine group discussions and three individual interviews were conducted comprising 42 health professionals and 14 relatives. Participant observations aided in giving the perspective of 30 residents with advanced dementia. Data analysis generated a total of 25 physical, psychosocial, and spiritual needs divided into 10 categories. Physical needs were classified as follows: "food intake," "physical well-being," and "physical activity and recovery." Categories of psychosocial needs were classified as follows: "adaptation of stimuli," "communication," "personal attention," "participation," "familiarity and safety," as well as "self-determination." Spiritual needs addressed "religion." The results revealed a multitude of key aspects for recognizing and meeting these needs, stressing the importance of personhood. CONCLUSION: People with advanced dementia in their final phase of life have a multitude of individual and complex needs. This evidence contributes to narrowing the current research gap, offering an orientation framework for research and practice.

Needs of people with severe dementia at the end-of-life: a systematic review.

BACKGROUND: Epidemiological data shows an increasing number of people affected by dementia. It is mentioned that people with severe dementia have special care needs which are intensified at the end-of-life. OBJECTIVE: This paper offers a systematic analysis of the current status of research on the needs of people with severe dementia in the last phase of their lives. METHODS: A systematic review of the MEDLINE, CINAHL, Cochrane Library, PsycINFO, and AMED databases performed up to April 2014 was further expanded by contacting experts, conducting internet searches, and screening relevant reference lists. Studies were screened according to defined criteria and appraised for methodological quality. Findings were then synthesized using a narrative thematic approach to identify and categorize relevant needs into thematic categories and subcategories. RESULTS: A total of ten studies published from 1993-2013 were identified, encompassing qualitative (n = 7), quantitative (n = 2), and a mixed-methods study (n = 1). Data synthesis yielded seven themes, with physical, social, and psychological needs the categories most frequently mentioned. Other categories were spiritual, supportive, and environmental needs and needs related to individuality. Needs were often named, but what they entailed operationally was not highlighted in detail. CONCLUSION: This systematic review shows the paucity of empirical findings on the needs of people with severe dementia. The structured presentation of thematic categories points to a clearer delineation of these needs. Thus, this overview emphasizes the topics for future research and can likewise serve as an orientation for care provision.

Palliative care needs of chronically ill nursing home residents in Germany: focusing on living, not dying.

OBJECTIVES: To explore the palliative care needs of nursing home residents in Germany who had not yet entered the dying phase. METHODS: Semi-structured interviews were conducted with a sample of nine residents suffering from chronic disease or frailty. The interviews were audio-recorded, transcribed, and analysed using a grounded theory approach. FINDINGS: The residents described multidimensional needs, which were categorized as 'being recognized as a person', 'having a choice and being in control', 'being connected to family and the world outside', 'being spiritually connected', and 'physical comfort'. They emphasized their desire to control everyday matters. Physical impairment was a problem, especially when independence was threatened, e.g. by immobility or a reliance on pain killers. CONCLUSION: The desire for self-determination is key when designing and evaluating primary and palliative care programmes for nursing homes. Early integration of palliative care can improve the quality of life of chronically ill residents.