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Older adults’ experiences of patient involvement in transitional care: a qualitative systematic review protocol

Høy, Bente1,2; Ludvigsen, Mette, Spliid2,3,4

JBI Database of Systematic Reviews and Implementation Reports: April 2018 - Volume 16 - Issue 4 - p 860–866
doi: 10.11124/JBISRIR-2017-003440

Review question/objective: The objective of this review is to identify and synthesize older adult's experiences of patient involvement in transitional care between hospital and home. The purpose is to build theory to inform future research and clinical practice.

The review will specifically address the following research questions:

  • What preference and meaning do older adults ascribe to patient involvement in transitional care between hospital and home?
  • What challenges, facilitators and outcomes do older adults experience in transitional care between hospital and home?
  • How do older adults experience their capacity and performance of patient involvement in transitional care between hospital and home?
  • How do older adults experience their level of patient involvement in transitional care between hospital and home?

1Independent Senior Researcher

2Randers Regional Hospital, Randers, Denmark

3Department of Clinical Medicine, Aarhus University, Aarhus, Denmark

4Danish Centre of Systematic Reviews: a Joanna Briggs Institute Centre of Excellence

Correspondence: Bente Høy,

There is no conflict of interest in this project.

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Older adults are frequent users of acute and community-based care and need optimal transitional care to achieve positive outcomes.1 For this group of patients, the transition from hospital to home typically follows a critical event, such as exacerbation of chronic illness or a fall, and often it can be coupled with a new level of vulnerability and functional decline.2,3 In Denmark, like other Western countries, several policy initiatives have been implemented to encourage improvements in transitional care. Typically, the care incorporates strategies intended to improve communication and transfer of medical information, enhance discharge follow-up, and decrease gaps in care between healthcare professionals.4-6 Evaluations have shown some improvement in readmission rates.5 However, a recent survey in Denmark showed that the efforts to improve transitional care have resulted in little or no continuity in the care between hospital and home.7 Few studies have specifically focused on the transitional process from a user perspective.8 From the perspective of older adults, the transition is documented to be challenging and they experience physical and/or psychological distress, health decline and disempowerment.9-11 To them, the transition between hospital and home may include physical, psychological and social processes, where the latter two dimensions may be neglected by healthcare professionals,3,12 possibly contributing to poor transitional care experiences. Thus, there is a need to gain insight into the transitional process from the perspectives of older adult patients. Such insights can provide a different kind of knowledge and contribute to better and more patient-centered solutions.

To better meet the needs and preferences of older patients, research has altered its focus from a health-administrative perspective to a patient perspective13,14 with emphasis on patient involvement.15-17 During the last two decades, patient involvement has become a legal right for patients as well as an explicit ideology of healthcare professionals worldwide. The traditional view is replaced by the expectations of an active patient involved in his or her own care. Patient involvement has been reported to have a positive effect on health outcomes, including health status, self-care ability and patient satisfaction.18,19 A recent US study found the risk of experiencing an adverse event was reduced by 50% if patients were involved in the treatment pathway.20 Furthermore, benefits include maintaining patient dignity, improving patients’ experiences of quality of care and preventing functional decline and disease progression.21-24 Most patients wish to play an active role in their own health care. They want to know how to protect and improve their health as well as to have information about their treatment options and possible outcomes. Moreover, it is documented that, in addition to fast effective health care advice when needed, most people want to know how they can contribute themselves.19,25,26 However, more involvement may increase the demands on individuals’ resources, decision-making ability and skills, and, for older adults suffering from frailty, the requirement of involvement may be difficult.27,28 Some studies have found that older adults wish to be active,16,29 others have found that they do not desire the same level of involvement as younger persons.25 This divergence may affect how involvement is addressed for this group in transitional care. Although involvement may improve older adults’ preparedness to manage their care, the shortened lengths of hospital stay combined with severe time constraints on health care may mean professionals still find it easier to perform transitional care for patients rather than with them. Despite the significance of patient involvement, it is documented that insufficient involvement in care and dissatisfaction appear to be increasing and patients still have limited choice and little control over what happens to them in their encounters with the healthcare system.30 A Danish survey of patient experiences from 2016 revealed that despite improvements in other areas, issues concerning the involvement of patients and their families were among the lowest rated.31 Between 14% and 28% of patients responded “not at all” to the question asking the extent to which the healthcare providers gave their relatives the opportunity to be involved in decisions about treatment and care.31

Current research indicates that involvement in own care is important for positive outcomes,32 . 33 and that older adults’ perspectives may provide an important frame for understanding and improving transitional care.11,34 However, the experience of involvement from the perspective of older adults is scarcely studied and poorly developed in the context of transitional care.14,35 A preliminary search for existing systematic reviews on this topic was conducted in the following sources: the Cochrane Database of Systematic Reviews, Campbell Library, JBI Database of Systematic Reviews and Implementation Reports, PROSPERO, CINAHL and PubMed. We found only one published qualitative systematic review on this topic. A review by Dyrstad et al. from 2015 on key issues of older adults’ involvement in transitional care.36 The study found that the participation from older adult in the transitional process was low, although they wanted to participate, and that several developed tools did not stimulate the older adults’ involvement. Hence, this unexplored area requires further investigation in order to expand the understanding of involvement as a phenomenon described and experienced by older adults in transitional care between hospital and home. This current review will explore in-depth how older adults experience patient involvement in all the elements of transitional care in order to inform future research and clinical practice.

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Inclusion criteria


The review will consider studies that include older adults who have experienced patient involvement in transitional care between hospital and home. Studies, including participants who cannot express their experiences due to severe cognitive impairment, will be excluded. Older adult is defined as aged 65 years or over of both genders. As such, there are no limitations for type of disease, chronic condition, vulnerability or frailty.

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Phenomena of interest

The current review will consider studies that investigate the experiences of patient involvement in the transitional care process. It includes participation which is often used interchangeably with involvement and the plethora of related terms such as user involvement, engagement, empowerment, shared decision making and partnership.37,38 In a health care context, the term, involvement, broadly refers to enabling participation in decision making, planning and performing, concerning own care in health and illness.23,39,40 Patient involvement can be understood as what patients can do in relation to their own health care and in interactions with health professionals. It can also be defined as what health professionals can do for them, and how both parties think and feel about their own and each other's roles, efforts and contributions. As such, patient involvement is experienced both as a process and as an outcome and includes capacity and performance, both concerning the patient and the health professionals.41 Thompson21 suggests five levels of involvement along a power continuum from a low level of patient power (= exclusion) to a high level of patient power (= informed decision making).

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The context of this study is transitional care between hospital and home. Transitional care is a broad term for care interventions that promote health, safety, and continuity of care for patients moving between levels of care and across care settings (e.g. from hospital to community care).42,43 Transitional care includes a broad range of time-limited services designed to ensure health care continuity, avoid preventable poor outcomes among risk populations, and promote the safe and timely transfer of patients from one level of care to another or from one setting to another. Transitional care is complementary to, but not the same as, primary care, care coordination, discharge planning, disease management, continuity of care, case management, comprehensive health care, patient transfer, hospital admission or discharge. The key characteristics of transitional care are: focus on highly vulnerable, chronically ill patients throughout critical transition processes in health care; the time-limited nature of services; and the emphasis on educating patients and family caregivers to address root causes of poor outcomes and avoid preventable readmission.42

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Types of studies

The review will include studies in peer-reviewed journals with a focus on qualitative data including, but not limited to, designs based on phenomenology, grounded theory, ethnography, action research, case studies and feminist research. Theses and dissertations will also be considered for inclusion. Conference papers will not be included.

A seminal Danish discussion paper, “When the patient wakes up”, published in 1999 emphasized the rising demand from patients to be more involved in own healthcare.44 Therefore, studies published from the year 2000 and onwards will be considered for inclusion in this review.

Studies published in English, German, Danish, Swedish and Norwegian will be included.

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Search strategy

A three-step search strategy will be utilized. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Searches will be developed and combined using broad search terms, key words, Medical Subject Headings (MeSH) and filters. The search for qualitative research will be combined with these terms: patient perspective, experiences, lifeworld, view, perception and preference. A preliminary full search strategy for CINAHL is detailed in Appendix I. Finally, the reference list of all identified studies selected for critical appraisal will be screened for additional studies. Citations of all included studies will also be searched for additional studies and considered for inclusion.

Keywords to be used in the search include:

  • Concept I: elder*, older*, aged
  • Concept II: Participation, involvement, user involvement, engag* patient activat*, empowerment, shared decision*, partnership, consumer participation
  • Concept III: transition*, transfer*, discharg*, admission*, continuity of care
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Information sources

The databases to be searched include:

  • PsycINFO (ProQuest)
  • Web of Science
  • Scopus
  • ProQuest Dissertations and Theses Global: Health and Medicine.

Journals that are published in Danish, Swedish and Norwegian relevant for this systematic review are all indexed in the above mentioned databases.

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Assessment of methodological quality

Qualitative studies selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI).45 Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. The results of critical appraisal will be reported in narrative form and in a table. All studies, regardless of the results of their methodological quality, will undergo data extraction and synthesis (where possible).

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Data extraction

Qualitative data will be extracted from individual studies using the standardized data extraction tools from JBI SUMARI45 by two independent reviewers. The data extraction will occur in two phases. The first phase involves extracting specific details about the study type, phenomena of interest, setting, geographical and cultural details, participants, data analysis undertaken and the authors’ conclusions. Authors of the included studies will be contacted for missing data. The second phase of data extraction involves extracting all findings related to the experience of older adults and the research questions. These findings will be extracted as verbatim extracts of the author's analytical interpretation. Each paper will be read several times by the authors to gain an understanding of the key concepts and findings. The findings will be extracted with a relevant illustration from the text to support each finding. In this phase, the findings from the included studies will be reviewed and assigned for credibility following the JBI guidelines.45

The decision will be based on following criteria:

  • Unequivocal: findings accompanied by an illustration that is beyond reasonable doubt and therefore not open to challenge.
  • Credible: findings accompanied by an illustration lacking clear association with it and therefore open to challenge.

Unsupported findings will not be included in the final synthesis, as these findings are not supported by credible data.

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Data synthesis

Data synthesis involve the aggregation or synthesis of findings to generate a set of statements that represent the aggregation. In this review, data synthesis will be undertaken in three phases following the meta-aggregative approach and using JBI SUMARI for data synthesis of qualitative studies.45

The three phases involve:

  • Extraction of findings with an accompanying illustration and assigned level of credibility (also the second stage of data extraction).
  • Development of categories for findings on the basis of similarity in meaning.
  • Development of synthesized findings of the categories in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form.
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Appendix I: Search strategy for CINAHL (EBSCO)



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Older adult; patient experience; review; transitional care; user involvement

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