Interventions for the empowerment of older people and informal caregivers in transitional care decision-making: short report of a systematic review.

BACKGROUND: Care transitions across different settings necessitate careful decision-making for all parties involved, yet research indicates that older people and informal caregivers do not have a strong voice in such decisions. OBJECTIVE: To provide a systematic overview of the literature about interventions designed to empower older people and informal caregivers in transitional care decision-making. DESIGN: A systematic review (Prospero Protocol CRD42020167961; funded by the EU's Horizon 2020 program). DATA SOURCES: Five databases were searched: PubMed, EMBASE, Web of Science, PsycINFO, and CINAHL. REVIEW METHODS: The review included evaluations of empowerment in decision-making interventions for older people and informal caregivers facing care transitions, that were published from the inception of the databases up until April 2022. Data extractions were performed by two independent researchers and the quality of studies was assessed with the relevant JBI-critical appraisal tools. A narrative descriptive analysis of the results was performed. FINDINGS: Ten studies, reporting on nine interventions, and including a total of 4642 participants, were included. Interventions included transition preparation tools, support from transition coaches, shared decision-making interventions, and advance care planning. Designs and outcomes assessed were highly diverse and showed a mix of positive and lacking effects. CONCLUSIONS: There is a lack of research on how to empower older people and their informal caregivers in transitional care decision-making. Empowerment in decision-making is usually not central in transitional care interventions, and effects on actual empowerment are mostly not assessed. Conclusions on how to empower older people and informal caregivers in transitional care decision-making cannot be drawn.

Transitional care decision-making through the eyes of older people and informal caregivers: An in-depth interview-based study.

BACKGROUND: Older people with multifaceted care needs often require treatment and complex care across different settings. However, transitional care is often inadequately managed, and older people and their informal caregivers are not always sufficiently heard and/or supported in transitional care decision-making. OBJECTIVE: To explore older people's and informal caregivers' experiences with, views on, and needs concerning empowerment in transitional care decision-making. METHODS: A qualitative descriptive study was conducted in the TRANS-SENIOR consortium's collaborative research using semistructured in-depth interviews between October 2020 and June 2021 in Flanders, Belgium. A total of 29 people were interviewed, including 14 older people and 15 informal caregivers who faced a transition from home to another care setting or vice versa. Data were analysed according to the Qualitative Analysis Guide of Leuven. FINDINGS: Five themes were identified in relation to the participant's experiences, views and needs: involvement in the decision-making process; informal caregivers' burden of responsibility; the importance of information and support; reflections on the decision and influencing factors. CONCLUSIONS: Overall, older people and informal caregivers wished to be more seen, recognised, informed and proactively supported in transitional care decision-making. However, their preferences for greater involvement in decision-making vary and are affected by several factors that are both intrinsic and extrinsic. Therefore, healthcare systems might seek out age-tuned and person-centred empowerment approaches focusing on older people's and informal caregivers' empowerment. For future studies, we recommend developing specific strategies for such empowerment. PATIENT OR PUBLIC CONTRIBUTION: Older persons' representatives were involved in designing the TRANS-SENIOR programme of research, including the current study. Healthcare professionals and nursing care directors were involved in the study design and the selection and recruitment of participants.

How do people living with chronic conditions and their informal caregivers experience primary care? A phenomenological-hermeneutical study.

AIMS AND OBJECTIVES: Gaining insight in how people living with chronic conditions experience primary healthcare within their informal network. BACKGROUND: The primary healthcare system is challenged by the increasing number of people living with chronic conditions. To strengthen chronic care management, literature and policy plans point to a person-centred approach of care (PCC). A first step to identify an appropriate strategy to implement PCC is to gain more insight into the care experiences of these people and their informal caregivers. DESIGN: A phenomenological-hermeneutical philosophy is used. The study is in line with the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ). METHOD: In-depth, semi-structured interviews with people living with chronic conditions and informal caregiver dyads (PCDs) (n = 16; 32 individuals) were conducted. An open-ended interview guide was used to elaborate on the PCDs' experiences regarding primary care. A purposive, maximal variation sampling was applied to recruit the participants. RESULTS: Based on sixteen PCDs' reflections, ten themes were identified presenting their experiences with primary care and described quality care as listening and giving attention to what people with chronic conditions want, to what they strive for, and above all to promote their autonomy in a context wherein they are supported by a team of formal caregivers, family and friends. CONCLUSION: To meet the PCDs' needs, self-management should be addressed in an interprofessional environment in which the PCD is an important partner. The findings may facilitate a shift to encourage PCDs in their strengths by enabling them to share their personal goals and by working towards meaningful activities in team collaboration. RELEVANCE TO CLINICAL PRACTICE: Three strategies-self-management support, goal-oriented care, and interprofessional collaboration-have been suggested to improve the PCDs' primary care experiences. These strategies could guide nursing practice in using more and improve high-quality nursing care.

The experiences, needs and expectations of patients regarding participation at home: an explorative study in Belgium.

BACKGROUND: Patients have an important role in the improvement of their health. Patient participation is a key component to achieving this. Some form of patient participation is already present in home care, but this needs to be optimised. AIM: Gaining insight into the expectations, experiences and needs of patients regarding patient participation in home care. DESIGN: A qualitative design was used. SETTING: The study was conducted in the Flemish part of Belgium, in a purposeful sample of patients who have already received nursing care at home for at least 6 weeks. METHODS: Semi-structured face-to-face in-depth interviews were conducted and analysed using the Qualitative Analyse Guide of Leuven. RESULTS: Patient participation in home care is a dynamic process. A total of six components, which interact with each other, were identified that explain this process. CONCLUSION: Patient participation in home care is the interaction of different components of a whole mechanism. Within this mechanism, home nurses play a key role to facilitate participation for patients.

'Living in a shrinking world'-The experience of loneliness among community-dwelling older people with reduced mobility: a qualitative grounded theory approach.

BACKGROUND: Loneliness is associated with severe consequences for both the physical and mental health of older people. Research has shown that mobility limitations are an important risk factor for the emergence and maintenance of feelings of loneliness. The aim of this study was to explore the experiences of loneliness among community-dwelling older people with reduced mobility and its underlying dynamics. METHODS: This study employed a qualitative, descriptive design, inspired by a grounded theory approach. Participants were purposively recruited in collaboration with home health care providers. The main inclusion criteria were as follows: aged 75 years or older, being mobile impaired, experiencing feelings of loneliness, and living at home and being cognitively able to be interviewed. Data analysis of 15 semi-structured, in-depth interviews was conducted based on the Qualitative Analysis Guide of Leuven (QUAGOL). RESULTS: Loneliness was expressed through all the stories, but it appeared as an elusive, intangible phenomenon. Both indicating the presence of loneliness and describing what this phenomenon means were difficult to express for most participants. Loneliness was experienced as an inherent part of the ageing process characterised by losses, limitations and meaninglessness. Participants described how they have experienced losing grip on the world in which they live and feel isolated in a literally and figuratively shrinking world. Loneliness is described as the feeling that one is unable to address the situation that results in deep sadness and the feeling of no longer being of value to their environment. CONCLUSIONS: This study shows that loneliness among community-dwelling older persons with reduced mobility is embedded in experiences of loss related to ageing, among which reduced mobility plays a significant role. The results suggest the existence of a more profound experience of loneliness than might appear at first glance. How to recognise experiences of loneliness and how to support a meaningful existence for community-dwelling older persons should be given priority in health care. The findings of this study can increase professional caregivers' sensitivity to implicit signals of loneliness. Further research is necessary to refine the outcomes and to further explore the role of reduced mobility in the experience of loneliness.

Complex Qualitative Data Analysis: Lessons Learned From the Experiences With the Qualitative Analysis Guide of Leuven.

In this article, the authors discuss critical factors to be considered when analyzing complex qualitative data. The experiences with the use of the Qualitative Analysis Guide of Leuven (QUAGOL) to analyze qualitative data were used as starting point to develop a deeper understanding of what a good qualitative analysis requires and how to deal with its challenges in less optimal research contexts. A critical analysis and discussion of the strengths and weaknesses of the guide in a broader methodological context supports its potential for use in developing strong qualitative evidence. The analysis highlighted three key strategies of undertaking the analysis of complex narrative data: the case-oriented approach, the method of constant comparison, and the use of data-generated codes. Having a good understanding of the underlying principles and how to implement them are key to conducting methodologically sound analyses.

High-risk medication in community care: a scoping review.

PURPOSE: To review the international literature related to high-risk medication (HRM) in community care, in order to (1) define a definition of HRM and (2) list the medication that is considered HRM in community care. METHODS: Scoping review: Five databases were systematically searched (MEDLINE, Scopus, CINAHL, Web Of Science, and Cochrane) and extended with a hand search of cited references. Two researchers reviewed the papers independently. All extracted definitions and lists of HRM were subjected to a self-developed quality appraisal. Data were extracted, analysed and summarised in tables. Critical attributes were extracted in order to analyse the definitions. RESULTS: Of the 109 papers retrieved, 36 met the inclusion criteria and were included in this review. Definitions for HRM in community care were used inconsistently among the papers, and various recurrent attributes of the concept HRM were used. Taking the recurrent attributes and the quality score of the definitions into account, the following definition could be derived: "High-risk medication are medications with an increased risk of significant harm to the patient. The consequences of this harm can be more serious than those with other medications". A total of 66 specific medications or categories were extracted from the papers. Opioids, insulin, warfarin, heparin, hypnotics and sedatives, chemotherapeutic agents (excluding hormonal agents), methotrexate and hypoglycaemic agents were the most common reported HRM in community care. CONCLUSION: The existing literature pertaining to HRM in community care was examined. The definitions and medicines reported as HRM in the literature are used inconsistently. We suggested a definition for more consistent use in future research and policy. Future research is needed to determine more precisely which definitions should be considered for HRM in community care.

Exploring the activity profile of health care assistants and nurses in home nursing.

Are home nurses (also known as community nurses) ready for their changing role in primary care? A quantitative study was performed in home nursing in Flanders, Belgium, to explore the activity profile of home nurses and health care assistants, using the 24-hour recall instrument for home nursing. Seven dates were determined, covering each day of the week and the weekend, on which data collection would take place. All the home nurses and health care assistants from the participating organisations across Flanders were invited to participate in the study. All data were measured at nominal level. A total of 2478 home nurses and 277 health care assistants registered 336 128 (47 977 patients) and 36 905 (4558 patients) activities, respectively. Home nurses and health care assistants mainly perform 'self-care facilitation' activities in combination with 'psychosocial care' activities. Health care assistants also support home nurses in the 'selfcare facilitation' of patients who do not have a specific nursing indication.

Development of a toolkit to improve interprofessional collaboration and integration in primary care using qualitative interviews and co-design workshops.

Background: Despite numerous attempts to improve interprofessional collaboration and integration (IPCI) in primary care, patients, care providers, researchers, and governments are still looking for tools and guidance to do this more efficiently. To address these issues, we decided to develop a generic toolkit, based on sociocracy and psychological safety principles, to guide care providers in their collaboration within and outside their practice. Finally, we reasoned that, in order to obtain integrated primary care, different strategies should be combined. Methods: Development of the toolkit consisted of a multiyear co-development process. Data originating from 65 care providers, through 13 in-depth interviews and five focus groups were analysed and subsequently evaluated in eight co-design workshop sessions, organised with a total of 40 academics, lecturers, care providers and members of the Flemish patient association. Findings from the qualitative interviews and co-design workshops were gradually, and inductively adapted and transformed into the content for the IPCI toolkit. Results: Ten themes were identified: (i) awareness of the importance of interprofessional collaboration, (ii) the need for a self-assessment tool to measure team performance, (iii) preparing a team to use the toolkit, (iv) enhancing psychological safety, (v) developing and determining consultation techniques, (vi) shared decision making, (vii) developing workgroups to tackle specific (neighbourhood) problems, (viii) how to work patient-centred, (ix) how to integrate a new team member, and (x) getting ready to implement the IPCI toolkit. From these themes, we developed a generic toolkit, consisting of eight modules. Conclusion: In this paper, we describe the multiyear co-development process of a generic toolkit for the improvement of interprofessional collaboration. Inspired by a mix of interventions from in and outside healthcare, a modular open toolkit was produced that includes aspects of Sociocracy, concepts as psychological safety, a self-assessment tool and other modules concerned with meetings, decision-making, integrating new team members and population health. Upon implementation, evaluation and further development and improvement, this compounded intervention should have a beneficial effect on the complex problem of interprofessional collaboration in primary care.

Home care nurses' management of high-risk medications: a cross-sectional study.

BACKGROUND: High-risk medications use at home entails an increased risk of significant harm to the patient. While interventions and strategies to improve medications care have been implemented in hospitals, it remains unclear how this type of medications care is provided in the home care setting. The objective was to describe home care nurses' management of high-risk medications. METHODS: A cross-sectional, descriptive design was set up in home care nurses in Flanders, Belgium. Participants were recruited through convenience sampling and could be included in the study if they provided medications care and worked as a home care nurses. Participants completed an online structured questionnaire. Questions were asked about demographic information, work experience, nurses' general attitude regarding high-risk medications, contact with high-risk medications and the assessment of risk and severity of harm, specific initiatives undertaken to improve high-risk medications care and the use of additional measures when dealing with high-risk medications. Descriptive statistics were used. RESULTS: A total of 2283 home care nurses participated in this study. In our study, 98% of the nurses reported dealing high-risk medications. Home care nurses dealt the most with anticoagulants (96%), insulin (94%) and hypnotics and sedatives (87%). Most nurses took additional measures with high-risk medications in less than 25% of the cases, with the individual double check being the most performed measure for all high-risk medications except lithium. Nurses employed by an organization received support mostly in the form of a procedure while self-employed nurses mostly look for support through external organizations and information sources. CONCLUSIONS: The study shows several gaps regarding high-risk medications care, which can imply safety risks. Implementation and evaluation of more standardized high-risk medications care, developing and implementing procedures or guidelines and providing continuous training for home care nurses are advised.

High-Risk Medication in Home Care Nursing: A Delphi Study.

AIMS: The aims of the study were to reach consensus on which medications in home care nursing should be considered high-risk medication (HRM) and to obtain recommendations about which interventions home care nurses can perform to improve quality of care and safety in managing these HRM. DESIGN: This is an international Delphi study with 13 purposively selected experts from 4 different countries. METHODS: A 3-round iterative Delphi survey was conducted from May 2018 to October 2018, based on a list of 32 medications previously reported as HRM in community care. A proposal for HRM was based on this literature search, and experts were asked to reflect on which (groups of) medications should be considered HRM by home care nurses (completeness of the list, risk assessment per [group of] medication, the need for home care nurse interventions, and the need for an HRM care procedure). The cutoff point for consensus was set at 80% of expert agreement. RESULTS: The panel assessed the initial list and added 30 (groups of) medications. In the last round, consensus of 80% or more was reached for 27 (groups of) medications to be considered HRM by home care nurses. For 28 medications, additional interventions by a home care nurse were considered warranted. A procedure or protocol for home care nurses was deemed necessary for 12 medications. CONCLUSIONS: We identified a set of (groups of) medications that should primarily be considered HRM by home care nurses.Impact:• What problem did the study address? This study clarified which medications should be considered HRM by home care nurses.• What were the main findings? Experts identified a set of 27 (groups of) medications that should primarily be considered HRM by home care nurses.• Where and on whom will the research have an impact? The results provide essential information for home care agencies when setting up an HRM policy.

Older peoples' and informal caregivers' experiences, views, and needs in transitional care decision-making: a systematic review.

BACKGROUND: Older people often experience multiple care transitions. These care transitions are critical and stressful moments for both older people and their informal caregivers alike and can have a negative effect on long-term outcomes. Greater attention needs to be paid to the involvement of older people and their informal caregivers in the process of decision-making when it comes to transitional care. OBJECTIVE: To provide an overview of older people's and their informal caregivers' experiences with decision-making, particularly when facing a transition from home to an institution for medical treatment or long-term care, or vice versa. DESIGN: A systematic literature review, perfomed within the scope of the TRANS-SENIOR network and reported according to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. DATA SOURCES: Five databases were searched: PubMed, EMBASE, Web of Science, PsycINFO, and CINAHL. REVIEW METHODS: This review included qualitative empirical reports that were published from the inception of the respective databases up to April 2020. The search strategy was based on five main concepts: 'old age', 'informal caregivers', 'Involvement in decision-making', 'transitional care', and 'home' as a location for the start or the end of the transition. All abstracts and full texts were screened double-blind, following specific eligibility criteria. Data extractions were performed by two independent reviewers and the quality of studies was assessed. FINDINGS: We included a total of 22 studies. The most relevant themes from the experiences of older people reported were: a) feelings of reduced autonomy and increased dependency, b) preferences for involvement in decision-making c) the influence of healthcare professionals, and d) support from informal caregivers. The most relevant themes from the experiences of informal caregivers were: a) informal caregivers' involvement in the decision-making process, b) the burden of responsibility, and c) barriers to decision-making. Overall, the experiences of older people and their informal caregivers varied considerably and were sometimes contradictory. CONCLUSIONS: When facing care transitions, older people express feelings of reduced autonomy and increased dependency. Their preference regarding involvement in decision-making varies considerably and their decisions are influenced by healthcare professionals and the support from informal caregivers. Informal caregivers find it important to be involved in the decision-making process, even though they experience the burden of responsibility and report specific difficulties relating to decision-making. Future studies should focus on methods by which to empower older people and informal caregivers in transitional care decision-making. This systematic review has been registered in Prospero (CRD42020167961).

Scoping review to identify strategies and interventions improving interprofessional collaboration and integration in primary care.

OBJECTIVE: To identify strategies and interventions used to improve interprofessional collaboration and integration (IPCI) in primary care. DESIGN: Scoping review DATA SOURCES: Specific Medical Subject Headings terms were used, and a search strategy was developed for PubMed and afterwards adapted to Medline, Eric and Web of Science. STUDY SELECTION: In the first stage of the selection, two researchers screened the article abstracts to select eligible papers. When decisions conflicted, three other researchers joined the decision-making process. The same strategy was used with full-text screening. Articles were included if they: (1) were in English, (2) described an intervention to improve IPCI in primary care involving at least two different healthcare disciplines, (3) originated from a high-income country, (4) were peer-reviewed and (5) were published between 2001 and 2020. DATA EXTRACTION AND SYNTHESIS: From each paper, eligible data were extracted, and the selected papers were analysed inductively. Studying the main focus of the papers, researchers searched for common patterns in answering the research question and exposing research gaps. The identified themes were discussed and adjusted until a consensus was reached among all authors. RESULTS: The literature search yielded a total of 1816 papers. After removing duplicates, screening titles and abstracts, and performing full-text readings, 34 papers were incorporated in this scoping review. The identified strategies and interventions were inductively categorised under five main themes: (1) Acceptance and team readiness towards collaboration, (2) acting as a team and not as an individual; (3) communication strategies and shared decision making, (4) coordination in primary care and (5) integration of caregivers and their skills and competences. CONCLUSIONS: We identified a mix of strategies and interventions that can function as 'building blocks', for the development of a generic intervention to improve collaboration in different types of primary care settings and organisations.

The professional self-image of registered home nurses in Flanders (Belgium): a cross-sectional questionnaire survey.

Despite their necessity and relevance, studies examining the professional self-image of nurses and instruments to measure this professional self-image in the homecare setting are scarce. This study highlights both the positive self-image of home nurses and the existence of a delicate balance between the large degree of autonomy that home nurses have and the need to feel supported in their professional role and responsibility. The practice environment, including time pressure, workload, and insufficient support, needs to be addressed to keep it from having a negative impact on the professional self-image of home nurses in the long-term.

A study of core interventions in home nursing.

AIM: To gain insight into the core interventions in home nursing. METHODS: In this descriptive, quantitative, cross-sectional study two questionnaires, based on the nursing interventions classification, were used to collect data from 501 nurses working in an organization for home nursing in Belgium. Response rate was 88%. RESULTS: The self-care assistance, (im)mobility and (psycho)social interventions are the most frequently performed interventions in home nursing, but they are performed and can only be interpreted in combination with other, more technical interventions. Therefore, these interventions can be considered the core interventions in home nursing.

The 24-h recall instrument for home nursing to measure the activity profile of home nurses: development and psychometric testing.

Home health care today is challenged by a shift from an acute to a chronic health-care model, moving the focus of care from the hospital to home-care setting. This increased focus on care at home emphasizes the need for an efficient, effective, and transparent management of home health care. However, it is not precisely known what home-care nurses do; what kind of care is received by patients; what the performance of home nurses is; and what the impact of the increasing need for home nursing is on the current and future role of home nurses. In this respect, it is necessary to gain a clear insight into the activity profile of home nurses, but there is no gold standard to measure their activities. This study reports on the development and psychometric testing of the '24-hour recall instrument for home nursing' to measure the activity profile of home nurses. Five home nurses in Belgium, simultaneously with the researcher, registered the performed activities in a total of 69 patients, using the 24-h recall instrument for home nursing. The validity and the interrater reliability of this instrument were high: the proportions that observed agreement were very high; the strength of kappa agreement was substantial to almost perfect; the prevalence index showed great variety; and the bias index was low. The findings in this study support the validity evidence based on test content and the interrater reliability of the 24-h recall instrument. This instrument can help to shape practice and policy by making the home nursing profession more transparent: a clear insight into the kind of care that is provided by home nurses and is received by the patients in primary care contributes to the development of a clear definition of the role of home nurses in health care.