'I see the high level of interpersonal support during the pandemic as proof that the good in people prevails': the COVID-19 pandemic as a catalyst for building a caring community?

BACKGROUND: The public health approach to end-of-life care has led to initiatives to promote caring communities, involving the community in supporting vulnerable dying people and their families. Our study aimed to explore how the COVID-19 pandemic affected the relevance of a caring community, whether the concept of a caring community took on a different meaning during and because of the pandemic, and how issues of death, dying and bereavement were perceived. METHODS: Qualitative online survey of people interested in the 'Caring Community Cologne' project. Participants in the survey attended the launch event for the Caring Community in Cologne. Direct invitations were sent to professionals and experts in various fields. Information about the event was also disseminated via social media and the city of Cologne's website. Data were collected from June 2020 to August 2020 and analyzed using Braun & Clarke's thematic analysis. RESULTS: N = 63 out of 121 people participated. The median age was 60 years; 65% of the participants were female. Most of them worked in the social sector (53%). Three respondents described positive changes brought about by the pandemic: Greater sense of community and solidarity, more confrontation with one's own finiteness, strengthening of relationships, mindfulness and slowing down of the pace of life. Negative effects mentioned included a deterioration in mental health and well-being, with an increase in anxiety, social isolation but also forced togetherness, which can lead to conflict, and a lack of emotional closeness due to restricted contact. CONCLUSIONS: Our study was conducted at the beginning of the pandemic and shows that the pandemic has raised awareness of the importance and potential benefits of community-based networks and the importance of adopting a public health palliative care approach to advocate for those most in need. The findings also highlight the role of community social capital in promoting engagement, resilience and well-being.

Older people's preferences and expectations of preventive oral care in the home.

OBJECTIVE: The aim of the study was to assess older people's preferences and expectations for preventive oral care in their own home. BACKGROUND: With increasing age, the use of dental services declines and oral health becomes secondary, yet good oral health contributes to quality of life and has a positive impact on general health. Thus, the healthcare system should offer a care structure in which oral health can be maintained into old age. To provide patient-centred care, patient preferences in additional preventive oral care need to be explored. MATERIALS AND METHODS: In this qualitative study, semi-structured interviews were conducted with community-dwelling individuals aged ≥65 years to understand their preferences and expectations for oral care in a home-based setting. Interviews were recorded, transcribed verbatim and analysed thematically. RESULTS: Fourteen dental patients were included. Three overarching themes were identified. The desire for independence was predominant when addressing their future capability to perform oral hygiene. When addressing possible future oral health support, self-determination and independence were important to them. Concerns about dependency in inpatient care facilities and the associated reduction in oral care were evident. Frequency, costs and the practice environment played a decisive role when thinking about additional preventive measures for their future. CONCLUSION: The results of this study provide important information about older people's preferences and expectations for preventive oral care in the home environment and relate to three core themes of (1) changes in oral hygiene skills and perceptions, (2) support and (3) organisational factors. These must be considered when planning and implementing preventive oral care.

Characteristics of desirable ambulatory health and oral healthcare from the perspective of community-dwelling people aged 80 and over-a qualitative examination.

BACKGROUND: people aged 80 and over frequently have diverse and complex health trajectories, which has been well studied. But their oral health is seldom included in care models. To realise comprehensive healthcare, both general and oral ambulatory (i.e. outpatient) healthcare need to be explored and conceptualised equally. OBJECTIVE: to elicit what matters to very old people regarding ambulatory health and oral healthcare. METHODS: interviews were conducted with non-institutionalised people aged 80 and over living in the area of Cologne, Germany. They were interviewed regarding their experiences of and views on ambulatory healthcare and oral healthcare care, respectively. Thematic analysis was performed to understand their motives and elicit relevant characteristics of desirable health services. RESULTS: from the interviews with 22 participants, 16 characteristics of good healthcare were described. These were generally similar for both general and oral healthcare and had a particular focus on patient-provider interaction and the organisation of care. However, regarding oral healthcare, the participants focused more strongly on the technical-medical skills of professionals and the perceptible treatment results and were more concerned about costs. It was noticeable that older people had the urge to differentiate themselves from 'others unnecessarily using health services'. They were unaware of possible future oral health deterioration and the resulting future needs. CONCLUSIONS: characteristics of good health and oral healthcare from the perspective of older people should be incorporated to ensure patient-centredness in care models. Older patients, as well as healthcare providers, need to be sensitised to their oral health needs to realise comprehensive healthcare.

What matters to people aged 80 and over regarding ambulatory care? A systematic review and meta-synthesis of qualitative studies.

The growing percentage of the population aged 80 and over is challenging for healthcare systems, as frailty and other complex health issues are common in this age group. In order to provide patient-centered ambulatory healthcare, their preferences and expectations need to be explored. Therefore, the aim of this study was to systematically search for and synthesize qualitative evidence on how people aged 80 and over believe ambulatory healthcare (medical and nursing care) should be delivered to them. Medline, PsycINFO, CINAHL, Web of Science Core Collection and Google Scholar were searched for full research reports of qualitative studies focusing on the preferences, wishes, needs, expectations and experiences of people aged 80 and over regarding ambulatory medical and nursing care. The results were screened by two independent reviewers using a two-step approach. The included studies were meta-synthesized using Thomas and Harden's 'thematic synthesis' approach in order to gain a new, second-order interpretation of the findings of the primary studies. In the intermediate synthesis step, 14 aspects of healthcare structures and care relationships were identified as relevant. Based on these, three underlying wishes were found: feeling safe, feeling like a meaningful human being, and maintaining control and independence. The results of this review are in line with other research, such as reviews focusing on the preferences of the younger age group (65-80). However, the importance of aspects of care relationships as an integral part of favorable ambulatory healthcare and the wish to be strengthened as a meaningful human being are emphasized more strongly. Supplementary Information: The online version contains supplementary material available at 10.1007/s10433-021-00633-7.

Providing ambulatory healthcare for people aged 80 and over: Views and perspectives of physicians and dentists from a qualitative survey.

BACKGROUND: People aged 80 and over frequently face complex chronic conditions and health limitations, including oral health problems, which are primarily addressed by ambulatory (i.e., outpatient) healthcare. This demographic development is expected to affect the provision of care. However, few studies have investigated physicians' and dentists' views across the various medical disciplines in non-institutional settings. This study investigated how healthcare providers perceive caring for very old people, and how they feel healthcare should be designed for this patient group. METHODS: A qualitative online survey comprising nine open-ended items was conducted among physicians and dentists practicing in the ambulatory healthcare sector in North Rhine-Westphalia, Germany. Apart from child and adolescent healthcare, no medical specialties were excluded. The results were analysed using Kuckartz' approach of structuring qualitative content analysis. A descriptive codebook was developed first. After coding all the material, recurring patterns between the topics were investigated and compared between two groups of participants, physicians and dentists. RESULTS: N = 77 cases were included in the analysis, from which n = 21 originated from the field of ambulatory general practice care and internal medicine, n = 19 from specialties (e.g., neurology, urology), and n = 37 from dentistry. Caring for patients aged 80 and over was perceived as challenging because of complex health conditions and treatments such as multimorbidity and polypharmacy, and patients' cognitive and physical limitations. In characterizing good care in older age, both groups found individual care important, as well as empathetic interactions and good collaboration in networks of healthcare providers. Inadequate reimbursement and limited resources and time were the most important barriers to providing good care, while one of the most important facilitators was healthcare providers' attitude and motivation. CONCLUSIONS: Physicians' and dentists' conceptions of good healthcare are in line with the conceptualization of patient-centred care. However, the transfer in everyday care delivery is hampered by the current design of healthcare structures. Healthcare providers feel overstrained by the increasing demands placed on them. Adaptations for improvement should focus on building strong networks of cooperating health professions, especially including dental care, and local social support structures.

Which features of ambulatory healthcare are preferred by people aged 80 and over? Findings from a systematic review of qualitative studies and appraisal of confidence using GRADE-CERQual.

BACKGROUND: Despite healthcare providers' goal of patient-centeredness, current models for the ambulatory (i.e., outpatient) care of older people have not as yet systematically incorporated their views. Moreover, there is no systematic overview of the preferable features of ambulatory care from the perspective of people aged 80 and over. Therefore, the aim of this study was to summarize their specific wishes and preferences regarding ambulatory care from qualitative studies. METHODS: The study was based on qualitative studies identified in a prior systematic review. Firstly, the findings of the qualitative studies were meta-summarized, following Sandelowski and Barroso. Secondly, a list of preferred features of care from the perspective of older people was derived from the included studies' findings through inductive coding. Thirdly, the review findings were appraised using the GRADE-CERQual tool to determine the level of confidence in the qualitative evidence. The appraisal comprised four domains: methodological limitations, coherence, data adequacy, and data relevance. Two reviewers independently evaluated every review finding in each domain. The final appraisals were discussed and ultimately summarized for the respective review finding (high, moderate, low, or very low confidence). RESULTS: The 22 qualitative studies included in the systematic review were mainly conducted in Northern and Western Europe (n = 15). In total, the studies comprised a sample of 330 participants (n = 5 to n = 42) with a mean or median age of 80 and over. From the studies' findings, 23 preferred features of ambulatory care were identified. Eight features concerned care relationships (e.g., "Older people wish to receive personal attention"), and 15 features concerned healthcare structures (e.g., "Older want more time for their care"). The findings emphasized that older people wish to build strong relationships with their care providers. The majority of the review findings reached a moderate or high confidence appraisal. CONCLUSIONS: While the listed features of healthcare structures are common elements of care models for older people (e.g., Geriatric Care Model), aspects of care relationships are somewhat underrepresented or are not addressed explicitly at all. Future research should further explore the identified preferred features and their impact on patient and care outcomes.

"My life became more meaningful": confronting one's own end of life and its effects on well-being-a qualitative study.

BACKGROUND: The perception of being closer to death can be experienced due to old age or life-limiting diseases, and can pose profound existential challenges. Actively confronting death-related issues and existential questions may increase psychosocial comfort and stimulate personal growth, whereas dysfunctional coping may lead to existential distress. To date, research on individual and (semi-)professional approaches to confronting the own end of life and the effects on one's well-being remain scarce. Therefore, the aim of this study was to explore individual strategies and wishes in order to derive ideas for appropriate support concepts. METHODS: Twenty semi-structured interviews were conducted with people over the age of 80 (n = 11) and with a life-limiting disease (n = 10). The interviews were transcribed verbatim and independently coded by two researchers according to Braun and Clarke's thematic analysis approach. RESULTS: While the use of (semi-)professional approaches (e.g., therapeutic support) to confronting existential questions in the shape of one's impending death was rare, individual coping strategies did have a positive impact on psychosocial comfort. There were hardly any significant differences between the participants aged 80 and over and those with a life-limiting disease in terms of individual coping strategies or how they approached the ends of their lives. Both groups reported that theoretical education, preparing for the ends of their lives (e.g., funerals), talking about death-related topics, reflecting on death-related topics, and contemplating death in a spiritual sense had positive effects on their assurance, self-determination and relief. The necessity of confrontation and a desire for low-threshold, accessible and flexible services to meet their existential and spiritual needs were highlighted. CONCLUSIONS: There is both a desire and a need for the addressing of existential questions. Outside of private contexts, however, the participants possessed little awareness of support services that focused on confronting end-of-life issues, and rarely used such services. Efforts to raise awareness for psychosocial and spiritual needs should be implemented within the care system, together with low-threshold support concepts, in order to increase psychosocial well-being. More research evaluating individual approaches to confronting the own end of life are needed to better understand this determinant of well-being and its mechanisms of action. TRIAL REGISTRATION: www.germanctr.de , DRKS-ID: DRKS00020577 .

Assessing the extent of shared decision making in Pediatrics: Preliminary psychometric evaluation of the German CollaboRATEpediatric scales for patients aged 7-18 years, parents and parent-proxy reports.

OBJECTIVE: To conduct a preliminary evaluation of psychometric properties of CollaboRATEpediatric, a set of three scales to assess shared decision making (SDM) with pediatric patients, parents and parents on behalf of their children (parent-proxy reports). As secondary objectives we examined the scales' distributional characteristics, acceptability, and agreement between scales. METHODS: Patients aged ≥ 7 years and parents were recruited in two outpatient facilities providing healthcare services for children with neurological and behavioral health conditions. We collected 46, 169 and 227 pediatric patient, parent-proxy and parent reports, respectively. Convergent, divergent and discriminative validity were investigated. Acceptability of the scales and agreement between patient and parent-proxy reports were explored by assessing item nonresponse and Bland-Altman plots. RESULTS: While convergent and divergent validity were established for the parent scale, discriminative validity was not demonstrated for any of the scales. The scales showed good to excellent acceptability. Parent-proxy reports agreed to a moderate extent with patients' self-reports of SDM. CONCLUSION: CollaboRATEpediatric offers a starting point for parsimoniously assessing SDM in Pediatrics, however further psychometric testing is warranted. PRACTICE IMPLICATIONS: Given limited psychometric support for the pediatric patient scale, we recommend using both the pediatric patient and parent-proxy report scales to assess SDM in pediatric patients until further psychometric testing is concluded.

The effects of confronting one's own end of life on older individuals and those with a life-threatening disease: A systematic literature review.

BACKGROUND: Awareness of the impending end of one's life can pose profound existential challenges, thereby impairing well-being. Confronting one's own end of life may be an approach to meet the psychological needs and consequently enhance overall well-being. Different approaches of confrontation have been evaluated positively using measures of psychosocial comfort. To date, there exists no systematic overview on the different ways of confrontation (e.g. psychosocial or individual coping approaches). AIM: To synthesize the existing knowledge on the effects of different approaches of confronting one's own end of life on older individuals and those with a life-threatening disease. DESIGN: A systematic review of quantitative, qualitative, and mixed-methods full research reports was conducted. The retrieved studies were screened and appraised for methodological quality by two independent reviewers based on MMAT and CASP. The findings were synthesized narratively using the meta-summary technique by Sandelowski and Barroso. DATA SOURCES: Medline, PsycINFO, and Web of Science were searched from inception to 12/2020. RESULTS: N = 49 studies reported on different approaches of confronting one's own end of life, including psychosocial interventions, meaning-enhancing approaches, educational programs, and learning from lived experiences. The results suggest a clear trend toward beneficial effects on psychosocial comfort (e.g. anxiety, sense of meaning, well-being). CONCLUSION: Low-threshold opportunities of confrontation have the potential to improve well-being and should be emphasized in practical implementation. The results can serve as a comprehensive basis for future research aiming to investigate the determinants of psychosocial comfort for people nearing the end of life.

Assessment of shared decision making in pediatrics: Developing German scales for patients aged 7-18 years, parents and parent-proxy reports (CollaboRATEpediatric).

OBJECTIVE: To develop parsimonious German scales (CollaboRATEpediatric) to assess shared decision making (SDM) with patients aged 7-18 years, parents and parents on behalf of their children (parent-proxy reports), and to establish comprehensibility and preliminary face validity. METHODS: Based on an existing SDM scale for adults (CollaboRATE) we developed CollaboRATEpediatric in a two-step approach: (1) team-based translation of the English CollaboRATE scale into German and adaptation for pediatric patients, parents and parent-proxy reports, followed by (2) iterative revisions of the CollaboRATEpediatric scales based on cognitive interviews with patients and parents until comprehensibility and preliminary face validity were established. RESULTS: Taking into account seven problem areas identified in four rounds of cognitive interviews (e.g., item complexity) we developed CollaboRATEpediatric scales for patients, parents and parent-proxy reports. By iteratively revising items we were able to resolve all problem areas and achieved full comprehensibility and intended interpretation of all items. CONCLUSION: The scales enable the parsimonious assessment of SDM with pediatric patients and parents as well as comparisons between the two groups. Future empirical work will establish the psychometric performance of CollaboRATEpediatric. PRACTICE IMPLICATIONS: CollaboRATEpediatric can be used in quality improvement initiatives to foster the comprehensive implementation of SDM in pediatrics.