During a trajectory of weakening or illness, older adults often need healthcare services across different settings. When they move from hospital to primary care after an exacerbation of disease, they feel vulnerable, unsafe, uncertain, lost and unsupported.1,2 Older adults are particularly vulnerable to experiencing problems in the transition between hospital and primary care and are more likely to experience adverse outcomes.3,4 For older adults, transitions are life experiences resulting in change.5
There is an increase in the number of older adults (65 years and over) worldwide, from the most developed countries to the lowest-income region.6 In 2016, the United States population at 65 years and over comprised 15% of the population and, in 2008, older adults represented 40% of hospitalized adults, but comprised less than 13% of the population.7,8 Likewise, in Denmark, older adults account for more than 40% of hospitalizations, however, they represent only 20% of the population.3
An international survey of older adults from 11 industrialized nations found shortcomings in access, coordination and patient-centered care.9 During an episode of illness requiring hospitalization, the older adult may experience inconsistency as they do not belong to a particular specialty in the hospital or they may receive care services from both hospital and primary care.1,10 These older adults may also experience a series of unplanned readmissions, as they are vulnerable to increased stress and medical crises.11 During such a process, there is considerable risk that older adults will be further weakened and the transition will be experienced as incoherent, insecure and stressful.1,2
In addition, transition from hospital to primary care contributes to concerning adverse events.12 In 2015, the Danish Patient Safety Authority reported that in 18% of reported adverse events related to transition, it was not until after the discharge that the primary care professionals identified the events.13 Many of these adverse events were caused by issues related to medication, but also to breakdowns in communication. Issues in handing over information, responsibility and documentation account for 10% of all adverse events and may result in further or insufficient care, conflicting recommendations, and errors.13 These results are supported by previous international research showing 20% of all hospitalized patients experience an adverse event after discharge, most commonly related to medication, but also to poor follow-up on tests or appointments during transition.14
In Denmark, as well as internationally, the 1990s saw an increasing interest in patient and public involvement (PPI).15-17 Policy initiatives have been implemented to encourage improvements in transitional care, and aim at strengthening the cross-sectorial collaboration on early detection and intervention.18 A variety of tools such as municipal emergency functions, outgoing hospital functions, continuity of care functions, and follow-up home visits have been implemented.19 Evaluations have shown some improvements in readmission rates attributed to these interventions.19 However, a recent evaluation report showed no effect of an integrated care-project, which revealed that older adults do not experience continuity of care between hospital and home.20 In addition, a nationwide survey from 2016 on patient experiences showed, despite improvements in other areas, involvement of patients and their relatives were among the lowest rated.21 Between 14% and 28% of patients reported “not at all” when asked whether the healthcare providers gave their families the opportunity to be involved in decisions about treatment and care.21
Supporting citizens to remain self-sufficient and independent is an important value in healthcare. Involvement of the patient and caregiver is alongside dignity, continuity of care and quality and patient safety as cornerstones of a 2016 plan of action issued by the Danish National Health Authority.17,19 Oxelmark et al. 22 described recently how nurses made an effort in partnering with the patient participants by striving to respect the patients’ view and accept the patient as a part of the care team. Identified hindering factors for participation included lack of teamwork, patients’ taking on passive roles, communication issues during ward rounds and having conversations at the patient's bedside. Nurses wanted change but lacked strategies on how to achieve it. Nurses preferred important decisions to be made away from the bedside.22 Furthermore, in 2014, Kjerholt et al. 23 highlighted nurses’ reflections on communication and the patients’ perspective. Nurses showed the importance of ensuring continuity, a comprehensive approach and integration of the patient perspective in care trajectories. Although the nurses adhered to these ideals, Kjerholt et al. pointed out that they rarely pursued them in practice. Barriers were organizational values, episodic focus on patients and lack of time. Nurses felt caught in a value conflict between nursing professional values and system values, which caused a feeling of powerlessness, and difficulty in maintaining status quo in their clinical practice.23 This indicates that health interventions to optimize patient involvement in transitions are rather complex. Nevertheless, findings from a 2013 review by Naylor et al. 24 reinforced the need for enhanced patient involvement and suggested comparative effectiveness research as an important and immediate path to optimize patient-clinician partnerships.24 The emphasis on patients’ active engagement only adds to the complexity of the issue.25,26
Today, there is a limited overview of the type of interventions aimed at enhanced patient engagement in transitions. In addition, we need an overview of the components needed to support older adults and their caregivers’ involvement in early and timely actions to prevent the decline in functional capacity during transition from hospital to home. A preliminary search in MEDLINE (PubMed), CINAHL, Embase, Cochrane Database of Systematic Reviews, and JBI Database of Systematic Reviews and Implementation Reports revealed one existing review from 2015 by Dyrstad et al. 27 on key issues of patient participation in transitions of the older adult. They found that participation in discharge planning and decision-making was low, although patients wanted to participate.27 They also found that some tools were successfully implemented (family meetings, discharge care plans, checklists, education programs, home visits), but several did not stimulate patient participation. The review highlighted important issues; however, it lacked an overview of theories and types of tools and their individual components in relation to definitions of patient participation.27 Furthermore, a good theoretical understanding of how interventions cause change is needed in order to identify and strengthen weak links in the causal chain.28,29
In addition, we identified one registered protocol for a review from 2016 by Francischetto et al. 30 They intend to identify existing reviews of discharge interventions and appraise how these interventions can impact outcomes in older adults such as rates of readmissions, health status, length of hospital stay and mortality.30 Their review has a parallel scope to this review and could inform clinical practice and contribute to identify any needs for further research. The objective of the Francischetto et al. 30 review is discharge-planning interventions for older adults and the outcomes of these interventions. However, the objective in this proposed scoping review is to identify and map existing evidence of involvement interventions for older adults in transitional care. This includes, for example, underlying theories, theories, principles and components.29 Our research questions specifically deal with the concept of involvement rather than on the organizational issues concerning discharge planning.
Concurrently with this review, the authors are planning a qualitative systematic review protocol for older adults’ experiences of involvement in transitional care. Neither the review of Dyrstad et al. 27 nor the protocol of Francischetto et al. 30 were aimed at analyzing pertaining issues encountered by healthcare providers. To be “…locally grown and owned…”,31 (p.283) future interventions must be tailored to healthcare providers involved in the development and implementation. It is therefore also pertinent to identify key issues from the healthcare providers’ perspective.
The mapping of available evidence regarding issues encountered by healthcare providers, theories, principles, components, methods, outcome measures, and suggested practical applications of patient involvement interventions for older adults, and the level of involvement will allow identification of relevant topics to contribute to the advancement of evidence-based care. The mapping will also contribute to the development of knowledge and identification of possible gaps in the design of patient involvement interventions for older adults in transitional care between hospital and primary care. Possible gaps would pertain to (lack of) descriptions of interventions’ theoretical underpinnings, principles, components, methods, outcome measures, and suggested practical applications.26,28 All information found about theories, principles, components or other methodological options will be important for the development of a specific intervention that evaluates patient involvement interventions for older adults in transitional care from hospital to primary care. Even if the interventions identified only consider some aspects or dimensions, they may provide important information to build a new intervention that could be implemented by health professionals. In the case of a lack of building blocks for the intervention in the existing knowledge, we will be able to suggest areas where more research is needed.
This scoping review will consider studies that include older adults 65 years and over. There will be no limitations for type of disease, chronic condition or frailty, though included studies should address interventions relevant for the older adult population.
The intervention of interest in this scoping review is involvement intervention as a dimension in transitional care.
Involvement has been described as covering five levels of patient-determined involvement: non-involvement, given information, dialogue, shared decision-making and autonomous decision-making.34 Thompson conceived the professionally determined patient involvement along a power continuum from a low level of patient power (= exclusion) to a high level of patient power (= informed decision making).34 Thus, we will consider studies at all the levels of this continuum to be included.
In this review, we will adopt the definition of transitional care by Naylor et al.,35 in which transitional care covers “a broad range of time-limited services designed to ensure health care continuity, avoid preventable poor outcomes among at-risk populations, and promote the safe and timely transfer of patients from one level of care to another or from one type of setting to another. Transitional care is complementary to but not the same as primary care, care coordination, discharge planning, disease management or case management”.35 (p.747) Interventions to improve the involvement of patients in transitions may focus on patients, healthcare providers and/or the healthcare system itself.36 We will use a wide definition for interventions, and we will consider all types of interventions. In this review, intervention is a collective term for concepts including, but not limited to, actions, processes, measures, strategies and initiatives. We will concentrate on interventions focused on older adults. This review will focus on interventions that occur during or after discharge from hospital in older adults.36 As such, the intervention can be regarded as complex.26,28 A review of literature by Clark in 2013 defined complex interventions as those being formed of parts, which can be material, human, theoretical, social, or procedural in nature, possibly stratified into higher and lower realms, that exercise power individually, in combination, or as emergent properties.26 We will use a categorization to describe the principles of interventions to improve the involvement of older patients in their own health care as described by Wensing and Grot.37 This includes the following categories:
- Interventions focusing on the use of healthcare (giving information on appropriate use of health care, giving information to help choose a care provider).
- Interventions focusing on the preparation for contact with a care provider (supplying patient data, preparation for active participation).
- Interventions focusing on contact with the care provider (providing older adult tailored information; stimulating the communication strategy of shared decision-making).
- Interventions focusing on feedback about care (older adults’ evaluations of care and procedures used for complaints and comments).37
This scoping review will consider care interventions in the context of the interphase between hospital and primary care, and that have been conducted between different locations in studies across the world. According to Coleman,38 representative locations include, but are not limited to: hospitals, sub-acute and post-acute nursing facilities, the patient's home, primary and specialty care, and long-term care facilities.
Types of studies
All qualitative, quantitative, economic and mixed methods studies will be considered for inclusion. In addition, reviews and systematic literature reviews of programs that meet the inclusion criteria will be retrieved. Theses and dissertations will also be considered for inclusion. Conference papers will not be included.
This proposed scoping review will be conducted in accordance with the Joanna Briggs Institute methodology.32,33
The search strategy will aim to find both published and unpublished studies. An initial limited search of MEDLINE and CINAHL has been undertaken to identify articles on this topic, followed by analysis of the text words contained in the titles and abstracts, and of the index terms used to describe these articles. Initial keywords used were aged, transition, transfer, participation, and discharge. The titles of studies in the initial search were reviewed to expand the keywords, and the index terms used to describe the studies were identified. This informed the development of a search strategy including identified keywords and index terms which will be tailored for each information source. Appendix I displays a PCC grid showing identified search terms with truncation keywords and MeSH for MEDLINE.
A preliminary full search strategy for MEDLINE is also detailed in Appendix I. The search strategy will be adjusted to each database and the systematic searches will be documented accordingly. The reference list of all included studies will be screened for additional studies and citing citations of all included studies pertaining to the research questions will be searched for and considered for inclusion.
The databases to be searched include: MEDLINE, CINAHL [EBSCO], PsycINFO [Ovid], Embase [Ovid] and Web of Science.
The trial registers to be searched include: JBI Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews, Current Controlled Trials, ClinicalTrials.gov.
The search for unpublished studies include: Open Grey, MedNar, ProQuest Dissertations and Theses Global: Health and Medicine (Doctoral dissertations only).
Journals published in English, German, Danish, Swedish and Norwegian relevant for this systematic scoping review are indexed in the above mentioned databases.
This subject has evolved considerably in recent years, and only the newest studies published from the year 2000 and until submission of the manuscript will be considered for inclusion.
Following the search, all identified citations will be collated and uploaded into RefWorks reference management system and duplicates removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. Studies that may meet the inclusion criteria will be retrieved in full and their details imported into Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI). The full text of selected studies will be retrieved and assessed in detail against the inclusion criteria. Full text studies that do not meet the inclusion criteria will be excluded and reasons for exclusion will be provided in an appendix in the final systematic review report. The results of the search will be reported in full in the final report and presented in a PRISMA flow diagram. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Six draft charting tables (Appendix II) have been developed by the reviewers at this protocol stage to extract relevant data, with the view that this will enable a logical and descriptive summary of the results that aligns with the objective and questions of the review and will facilitate the identification of gaps in the literature. Key information that will be extracted is based on our theoretical understanding as stated in the PCC. (i.e. the data will include specific details about the populations, concept, context and study methods of significance to the scoping review question and specific objectives). The information to be extracted on the study level are: author(s), distribution of studies by year or period of publication, countries of origin, and aims/purposes. The key information that the reviewers have planned to extract pertaining to the population are study population and sample size. Data pertaining to the concept is the intervention (methodology, name, type, theory, components, specific methods, suggested practical applications, time, duration, outcome measures [subjective/objective]), and involvement principle. In addition, we plan to extract data on context and data on key findings that relate to the scoping review questions and, as a result, appraise gaps in each study. The charting table may be further refined at the review stage and updated accordingly. Modifications will be detailed in the full scoping review report.
Authors of papers will be contacted to request missing or additional data where required.
The extracted data will be presented in diagrammatic or tabular form in a manner that aligns to the objective/s and scope of this scoping review. After the data the data extraction is completed, a thinly described or empty column is indicating a gap in evidence regarding the specific matter that the column cover. A narrative summary will accompany the tabulated and/or charted results and will describe how the results relate to the reviews objective and questions.
We thank Ms. Marianne Godt Hansen, MA in International Business Communication, who provided language support, and Librarian Henrik Laursen, who assisted with the systematic search on behalf of Randers Regional Hospital, Denmark.
Appendix I Search strategy for MEDLINE
(((((((((“Aged”[Majr]) OR elder*[Text Word]) OR older*[Text Word]) OR senior*[Text Word])) AND ((((((((((((“Patient Participation”[Mesh]) OR “Decision Making”[Mesh]) OR participat*[Text Word]) OR patient involv*[Text Word]) OR user involv*[Text Word]) OR engag*[Text Word]) OR empowe* [Text
Word]) OR patient activat*[Text Word]) OR active patient*[Text Word]) OR shared decision*[Text
Word]) OR partnership*[Text Word]) OR involvement[Text Word])) AND (((((((((((((“Transitional
Care” [Mesh]) OR “Patient Discharge”[Mesh]) OR “Patient Transfer”[Mesh]) OR “Continuity of Patient Care”[Mesh:NoExp]) OR “Patient Handoff”[Mesh]) OR transition*[Text Word]) OR transfer*[Text Word]) OR discharg*[Text Word]) OR continuity of care[Text Word]) OR handover[Text Word]) OR patient handoff[Text Word]) OR patient hand-off[Text Word]) OR hand-over[Text Word])) AND (((“Community Health Services”[Mesh]) OR home[Text Word]) OR communit*[Text Word])) AND ((“2000/01/01”[PDat]: “3000/12/31”[PDat]) AND (Danish[lang] OR
English[lang] OR German[lang] OR Norwegian[lang] OR Swedish[lang])))
Search 2017.09.19: 927 records
Appendix II: Data extraction instruments
Quantitative studies: study and population details
Quantitative studies: concept details
Quantitative studies: context and conclusion details
Qualitative studies: study and population details
Qualitative studies: concept details
Qualitative studies: context and conclusion details
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