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.
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.
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).
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
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.
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
The databases to be searched include:
- CINAHL (EBSCO)
- PsycINFO (ProQuest)
- Web of Science
- 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.
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).
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.
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.
Appendix I: Search strategy for CINAHL (EBSCO)
1. Coleman EA, Boult C. Improving the quality of transitional care
for persons with complex care needs. J Am Geriatr Soc
2003; 51 4:556–557.
2. Nicholson C, Meyer J, Flatley M, Holman C. The experience of living at home with frailty in old age: a psychosocial qualitative study. Int J Nurs Stud
2013; 50 9:1172–1179.
3. Rydeman I, Tornkvist L. Getting prepared for life at home in the discharge process--from the perspective of the older persons and their relatives. Int J Older People Nurs
2010; 5 4:254–264.
4. Sundhedsstyrelsen, (Danish National Board of Health). Styrket indsats for den ædre medicinske patient: fagligt oplæg til en national handlingsplan 2016–2019 (Strengthened efforts for the elderly medical patient: professional proposal for a national action plan 2016–2019). Version: 1,0 ed. Kbh.: Sundhedsstyrelsen, 2016.
5. Buch MS, Jacobsen M, Kolodziejczyk C, Ladekjær E. Evaluering af indsats for forløbskoordination - erfaringer med fremskudt visitation i fire kommuner (Evaluation of continuity of care initiatives: Experiences from for four municipalities). Kbh.: Det Nationale Institut for Kommuners og Regioners Analyse og Forskning, KORA, 2016.
6. Kjerholt M, Wagner L, Delmar C, Clemensen J, Lindhardt T. Continuity in care trajectories of older chronically ill patients in a battlefield of competing rationales. Int J Older People Nurs
2014; 9 4:277–288.
7. Buch MS, Jakobsen M, Sundhedsstyrelsen. Evaluering af indsats for forløbskoordination: slutstatus for regionale og kommunale aktiviteter og resultater (Evaluation of continuity of care initiatives: final report for regional and municipal activities and results). Kbh.: Det Nationale Institut for Kommuners og Regioners Analyse og Forskning, KORA, 2016.
8. Meleis AI. Transitions theory: middle-range and situation-specific theories in nursing research and practice. New York: Springer Pub. Co; 2010.
9. Hastings SN, Purser JL, Johnson KS, Sloane RJ, Whitson HE. Frailty predicts some but not all adverse outcomes in older adults discharged from the emergency department. J Am Geriatr Soc
2008; 56 9:1651–1657.
10. McKeown F. The experiences of older people on discharge from hospital following assessment by the public health nurse. J Clin Nurs
2007; 16 3:469–476.
11. Allen J, Hutchinson AM, Brown R, Livingston PM. User Experience and Care Integration in Transitional Care
for Older People From Hospital to Home: A Meta-Synthesis. Qual Health Res
2017; 27 1:24–36.
12. Ellins J, Glasby J, Tanner D, McIver S, Davidson D, Littlechild R, et al. Understanding and improving transitions of older people: a user and carer centred approach. National Institute for Health Research Service Delivery and Organisation Programme [serial online] 2012; 1:1–169. Available from: NHS National Institute for Health Research. Final report: www.birmingham.ac.uk/documents/news/sdotransitions-report.pdf
Accessed 12/03, 2017.
13. Shepperd S, Parkes J, McClaren J, Phillips C. Discharge planning from hospital to home. Cochrane Database Syst Rev
14. Allen J, Hutchinson AM, Brown R, Livingston PM. Quality care outcomes following transitional care
interventions for older people from hospital to home: a systematic review
. BMC Health Serv Res
15. Bull MJ, Hansen HE, Gross CR. A professional-patient partnership model of discharge planning with elders hospitalized with heart failure. Appl Nurs Res
2000; 13 1:19–28.
16. Huber DL, McClelland E. Patient preferences and discharge planning transitions. J Prof Nurs
2003; 19 4:204–210.
17. Bauer M, Fitzgerald L, Haesler E, Manfrin M. Hospital discharge planning for frail older people and their family. Are we delivering best practice? A review
of the evidence. J Clin Nurs
2009; 18 18:2539–2546.
18. Coulter A. Partnerships with patients: the pros and cons of shared clinical decision-making. J Health Serv Res Policy
1997; 2 2:112–121.
19. Coulter A. The evidence speaks for itself ... but can the public? Nurs Manag (Harrow)
2004; 11 8:12–13.
20. Weingart SN, Zhu J, Chiappetta L, Stuver SO, Schneider EC, Epstein AM, et al. Hospitalized patients’ participation and its impact on quality of care and patient safety. Int J Qual Health Care
2011; 23 2:269–277.
21. Thompson AGH. The meaning of patient involvement and participation in health care consultations: A taxonomy. Soc Sci Med
2007; 64 6:1297–1310.
22. Hibbard JH, Stockard J, Tusler M. Hospital performance reports: impact on quality, market share, and reputation. Health Aff (Millwood)
2005; 24 4:1150–1160.
23. Videnscenter for Brugerinddragelse i Sundhedsvæsenet (VIBRIS) (Knowlege Center for User Involvement
). Inddragelse. Definition af brugerinddragelse (Involvement. Definition of user involvement
). Videnscenter for Brugerinddragelse i Sundhedsvæsenet [serial online] 2016; Available from: Videnscenter for Brugerinddragelse i Sundhedsvæsenet. https://danskepatienter.dk/vibis
Accessed 12/03, 2017
24. Høy B, Lillestø B, Slettebø A, Saeteren B, Heggestad AK, Caspari SA, et al. Maintaining dignity in vulnerability: A qualitative study of the residents’ perspective on dignity in nursing homes. Int J Nurs Stud
25. Say R, Murtagh M, Thomson R. Patients’ preference for involvement in medical decision making: a narrative review
. Patient Educ Couns
2006; 60 2:102–114.
26. Barello S, Graffigna G, Vegni E. Patient engagement as an emerging challenge for healthcare services: mapping the literature. Nurs Res Pract
27. Ekdahl AW, Andersson L, Friedrichsen M. They do what they think is the best for me. Frail elderly patients’ preferences for participation in their care during hospitalization. Patient Educ Couns
2010; 80 2:233–240.
28. Tutton EM. Patient participation on a ward for frail older people. J Adv Nurs
2005; 50 2:143–152.
29. Foss C, Askautrud M. Measuring the participation of elderly patients in the discharge process from hospital: a critical review
of existing instruments. Scand J Caring Sci
2010; 24 (Suppl 1):46–55.
30. Coulter A, Jenkinson C. European patients’ views on the responsiveness of health systems and healthcare providers. Eur J Public Health
2005; 15 4:355–360.
31. Enhed for evaluering og brugerinddragelse LUP, Center for Evaluation and User involvement
). Den Landsdækkende Underøgelse af Patientoplevelser (The nationwide survey of patient experiences). Kbh.: Enhed for evaluering og brugerinddragelse, 2015.
32. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA
2002; 288 19:2469–2475.
33. Goncalves-Bradley DC, Lannin NA, Clemson LM, Cameron ID, Shepperd S. Discharge planning from hospital. Cochrane Database Syst Rev
34. Bate P, Robert G. Bringing User Experience to Healthcare Improvement: The Concepts, Methods and Practices of Experience-Based Design. UK: Radcliffe Publishing; 2007.
35. Foss C, Hofoss D. Elderly persons’ experiences of participation in hospital discharge process. Patient Educ Couns
2011; 85 1:68–73.
36. Dyrstad DN, Testad I, Aase K, Storm M. A review
of the literature on patient participation in transitions of the elderly. Cogn Tech Work
37. Cahill J. Patient participation--a review
of the literature. J Clin Nurs
1998; 7 2:119–128.
38. Cahill J. Patient participation: a concept analysis. J Adv Nurs
1996; 24 3:561–571.
39. Wetzels R, Harmsen M, van WC, Grol R, Wensing M. Interventions for improving older patients’ involvement in primary care episodes. Cochrane Database Syst Rev
40. Eldh AC, Ekman I, Ehnfors M. A comparison of the concept of patient participation and patients’ descriptions as related to healthcare definitions. Int J Nurs Terminol Classif
2010; 21 1:21–32.
41. World Health Organization. International classification of functioning, disability and health: ICF. Geneva: World Health Organization; 2001.
42. Naylor MD, Aiken LH, Kurtzman ET, Olds DM, Hirschman KB. The care span: The importance of transitional care
in achieving health reform. Health Aff (Millwood)
43. Coleman EA, Boult C. Improving the Quality of Transitional Care
for Persons with Complex Care Needs. J AM GERIATR SOC
44. Hede A, Andersen J. Når patienten vågner: et debatoplæg om det 21. århundredes patientkultur (When the patient wakes up: a discussion paper on the 21st century patient culture). Kbh: Mandag Morgen - Strategisk Forum; 1999.
45. The Joanna Briggs Institute. Joanna Briggs Institute Reviewers’ Manual. Australia: Joanna Briggs Institute; 2014.