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S YS T E M AT I C R E V I E W P R O T O C O L

Palliative rehabilitation interventions in palliative care:


a scoping review protocol
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Vitor Parola 1,2,3  Adriana Coelho 2,3  Hugo Neves 2,3  Daniela Cardoso 2,3  Maria Almeida 2  Arménio Cruz 2 
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João Apóstolo 2,3


1
University Fernando Pessoa, Faculty of Health Sciences, Porto, Portugal, 2Health Sciences Research Unit: Nursing, Nursing School of Coimbra,
Coimbra, Portugal, and 3Portugal Centre for Evidence Based Practice: A JBI Centre of Excellence, Coimbra, Portugal

ABSTRACT

Objective: The objective of this scoping review is to examine and map interventions of palliative rehabilitation that
are implemented and evaluated in palliative care.
Introduction: Palliative rehabilitation is defined as the process of helping individuals with a progressive, often
advanced or incurable disease reach their physical, psychological, and social potential consistent with physiological
and environmental limitations and life preferences. Rehabilitation may prolong functional independence and
improve quality of life. Information on palliative rehabilitation interventions, their characteristics, contexts, and
population is dispersed throughout the literature, hence the need for a scoping review.
Inclusion criteria: This scoping review will consider all studies that focus on qualified health care professionals
working in palliative care who are caring for patients 18 years of age or older, and studies that focus on the concepts
of palliative rehabilitation interventions. This scoping review will consider all palliative rehabilitation interventions
implemented and evaluated in the context of palliative care.
Methods: The search strategy aims to find published and unpublished studies. The databases to be searched will
include CINAHL Complete, PubMed, Scopus, SciELO, Cochrane Central Register of Controlled Trials, and PEDro. The
search for unpublished studies will include DART-Europe, OpenGrey, and RCAAP. Studies published in English,
Spanish, and Portuguese carried out from 2009 onward will be considered for inclusion. Retrieved papers will be
screened for inclusion by two reviewers. Data will be extracted and presented in tabular form and a narrative
summary that aligns with the review’s objective. Any disagreements that arise between the reviewers will be resolved
through discussion or with a third reviewer.
Keywords end of life care; palliative care; rehabilitation; rehabilitation nursing; scoping review
JBI Evid Synth 2020; 18(11):2349–2356.

Introduction through the prevention and relief of suffering by


ife expectancy is gradually increasing as a result means of early identification and impeccable assess-
L of advances in health care. Subsequently, the
number of persons living with chronic degenerative
ment and treatment of pain and other problems,
physical, psychosocial and spiritual.’’2(p.84) Since
and disabling disease has increased as a result of the publication of this definition, the approach to
advances in health care.1 This factor has contributed palliative care has changed from being a service in
to an increasing need for palliative care. According the last days of life to being a holistic approach to
to the World Health Organization’s 2002 definition, managing symptoms associated with progressive
palliative care is ‘‘an approach that improves the disease and disability, and according to the needs
quality of life of patients and their families facing the of patients and families.3,4
problems associated with life-threatening illness, Palliative care is an interdisciplinary and interpro-
fessional approach to care that aims to relieve physi-
cal, psychosocial, and spiritual symptoms in order to
Correspondence: Vitor Parola, vparola@ufp.edu.pt maintain the highest level of function. Rehabilitation
The authors declare no conflict of interest. professionals are an integral part of this team.5,6
DOI: 10.11124/JBIES-20-00024 Both palliative care and rehabilitation share essential

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SYSTEMATIC REVIEW PROTOCOL V. Parola et al.

characteristics in that they are symptom-oriented dispersed in the literature, which impedes the con-
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approaches that focus on function and comfort struction of precise questions on the effectiveness of
within a holistic framework.7 The goal is to promote those interventions and, consequently, the conduct
independence in self-care activities, better symptom- of a systematic review. It is acknowledged that
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atic control, and stabilization of functional decline in different interventions were implemented in differ-
line with individual life preferences. Ongoing assess- ent contexts; however, a summary of palliative reha-
ment of patient response indicating improvement, bilitation interventions implemented in the context
stabilization, or deterioration is conducted, and reg- of palliative care does not exist. The literature does
imens are modified as appropriate.8-10 Rehabilita- not clarify the characteristics of the different pallia-
tion may ‘‘improve quality of life by palliating tive rehabilitation interventions programs.
function, mobility, activities of daily living, pain Therefore, the objective of this review will be to
relief, endurance, and the psyche of a patient while clarify the characteristics, contexts, and application
helping to maintain as much independence as pos- of palliative care interventions. Having a map of the
sible.’’11(p.34) Many palliative care patients are nature of the evidence in this area is needed to guide
unduly restricted in performing according to their development of precise questions on effectiveness or
functional capacity5,6,12; however, it is only possible meaning. This scoping review intends to respond to
to reach the patient’s maximum potential in the these questions.
presence of symptomatic control and when provided This scoping review will utilize JBI methodology
with the proper incentive.5,6,12 for the conduct of scoping reviews.21,22 According to
Regardless of substantial advances in understand- JBI, ‘‘scoping reviews undertaken with the objective
ing the benefits of early integration of palliative care of providing a map of the range of the available
with disease management, many people living with a evidence can be undertaken as a preliminary exercise
chronic, life-threatening illness either do not have any prior to the conduct of a systematic review.’’21(p.6)
palliative care service or receive services just in the last Therefore, this mapping of rehabilitation interven-
phase of their illness.1,13,14 Approximately 50% of tions will explore relevant information to help
admissions in several palliative care units end with the develop knowledge, identify possible gaps, and
patient returning home or to families.5 Palliative inform systematic reviews.
rehabilitation enhances the likelihood of the patient This scoping review is part of a research project
returning home with the highest possible functional that may lead to a systematic review focusing on the
independence, and offers a support system to help best evidence on the effects of palliative rehabilita-
patients live as creatively and actively as possible until tion interventions. In addition, this mapping will
death. Unfortunately, not all palliative care units help inform the scientific community of the available
adopt a rehabilitative approach to patient care.5,8,11 rehabilitation interventions for patients in palliative
Patients have described rehabilitation as bringing care.
a sensation of relief, well-being, and confidence. An initial search of the JBI Database of Systematic
These time-limited improvements in specific ranges Reviews and Implementation Reports, the Cochrane
can potentially enhance functional independence Library, MEDLINE, and CINAHL revealed no scop-
and the ability to continue being active for as long ing review (published or in progress) on this topic.
as possible, contributing to a higher quality of Therefore, it is important to examine and map inter-
life.15,16 Other studies with cancer patients reinforce ventions of palliative rehabilitation that are imple-
the importance of palliative rehabilitation with char- mented and evaluated in palliative care.
acteristics such as pain, mobility, mood, cognitive
function, and quality of life.17,18 In the case of Review questions
chronic heart failure, chronic obstructive pulmonary i) What palliative rehabilitation interventions
disease, and neurologic illnesses, there is evidence have been implemented and evaluated?
that palliative rehabilitation has an impact in quality ii) In which domains (physical, cognitive, and
of life, mood, the ability to exercise, fatigue, and emotional) have palliative rehabilitation inter-
dyspnea.19,20 However, information on imple- ventions been implemented?
mented and evaluated interventions, their character- iii) What are the characteristics (duration, dose,
istics, contexts of application, and population is and frequency) of these interventions?

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SYSTEMATIC REVIEW PROTOCOL V. Parola et al.

iv) Which health care professionals (e.g., nurses, was undertaken to identify articles on the topic. The
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physicians, physiotherapists) implement pallia- text words contained in the titles and abstracts of
tive care rehabilitation interventions? relevant articles, and the index terms used to describe
v) In which populations (oncology and non-oncol- the articles were used to develop a full search strategy
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ogy patients) are the palliative rehabilitation for PubMed (see Appendix I). The search strategy,
interventions implemented and evaluated? including all identified keywords and index terms, will
be adapted for each included information source. The
Inclusion criteria reference lists of articles included in the review will be
Participants screened for additional papers.
This scoping review will consider all studies that The databases to be searched will include CINAHL
include patients 18 years of age or older. Complete (EBSCO), MEDLINE (PubMed), Scopus,
SciELO, Cochrane Library, and PEDro. The search
Concept for unpublished studies will include DART-Europe,
This review will include studies that focus on palliative
OpenGrey, and RCAAP.
rehabilitation interventions provided by a qualified
Studies published in English, Spanish, and Portu-
health care professional, including, but not limited to,
guese from 2009 onward will be considered for
physicians, registered nurses, physiotherapists, psychol-
inclusion. The 10-year time frame has been applied
ogists, social workers, and occupational therapists.
in light of the World Health Organization’s 2002
These interventions may include, but will not be
revision of the definition of palliative care to extend
limited to, respiratory kinesiotherapy, cardiac rehabil-
the concept and make it applicable to all diseases,1,2
itation, physical rehabilitation, and gait reeducation.
and in light of the global crisis (2007–2008), which
Context forced many health systems to face structural
This scoping review will consider palliative rehabili- reform.23-26 Applying this time limitation will more
tation interventions implemented and evaluated in accurately represent this new reality.
the context of specialist palliative care, more specifi-
cally, palliative care units, specialized palliative Study selection
home care, or hospices. Following the search, all identified citations will be
collated and uploaded into Mendeley V1.19.4 (Men-
Types of sources deley Ltd., Elsevier, Netherlands) and duplicates
This scoping review will consider quantitative stud- removed. Two independent reviewers will then screen
ies, qualitative studies, and systematic reviews. titles and abstracts for assessment against the inclusion
Quantitative designs include any experimental criteria for the scoping review. Studies that could
study designs (e.g., randomized controlled trials, potentially meet the inclusion criteria will be retrieved
non-randomized controlled trials, or other quasi- in full text. If the reviewers have uncertainties about the
experimental studies, including before and after stud- relevance of a study or if the abstract is unclear, the full
ies), and observational designs (e.g., descriptive studies, article will be retrieved. The full text of selected studies
cohort studies, cross-sectional studies, case studies, and will be retrieved and assessed in detail against the
case series studies). Qualitative designs include any inclusion criteria. Full-text studies that do not meet
studies that focus on qualitative data, such as but the inclusion criteria will be excluded, and reasons for
not limited to, phenomenology, grounded theory, exclusion will be provided in an appendix in the final
and ethnography designs. report of the scoping review. The results of the search
will be reported in full in the final report and presented
Methods in a Preferred Reporting Items for Systematic Reviews
The proposed scoping review will be conducted and Meta-Analyses Extension for Scoping Reviews
following JBI methodology.21,22 (PRISMA-ScR) flow diagram.27 Any disagreements
that arise between the reviewers will be resolved
Search strategy through discussion or with a third reviewer.
The search strategy will aim to locate both published Studies identified from reference list searches will
and unpublished primary studies and reviews. An initial be assessed for relevance based on the study’s title
limited search of PubMed and CINAHL (via EBSCO) and abstract.

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SYSTEMATIC REVIEW PROTOCOL V. Parola et al.

Data extraction 15]. Available from: https://www.who.int/cancer/publica


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Data will be extracted from papers included in the tions/nccp2002/en/.


review using a charting table aligned to the objective 3. World Health Organization. Planning and implementing
and question of this research (Appendix II), as palliative care services: a guide for programme managers
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8KKGKV0Ymy+78= on 01/14/2024

[Internet]. 2016 [cited 2020 Jan 15]. Available from: https://


indicated by the methodology for scoping reviews
apps.who.int/iris/handle/10665/250584.
developed by JBI.21
4. Leysen B, Van Daele A, Verrept T, Saeys W. Applied phys-
The draft data extraction tool will be modified as iotherapeutic and occupational therapeutic interventions
required throughout the review, depending on the within palliative care: an exploratory survey. Prog Palliat
data extracted from the included studies.21 These Care 2019;27(3):109–16.
modifications will be documented in the full scoping 5. Twycross RG. Palliative care: an international necessity. J
review report. Two reviewers will extract data inde- Pain Palliat Care Pharmacother 2002;16(1):61–79.
pendently. Any disagreements that arise between the 6. Kanach FA, Brown LM, Campbell RR. The role of rehabilita-
reviewers will be resolved through discussion or with tion in palliative care services. Am J Phys Med Rehabil
a third reviewer. 2014;93(4):342–5.
The two reviewers, independent of each other, will 7. Waldron M, WG K, Hasson F, et al. Allied health professional’s
views on palliative care for people with advanced Parkin-
chart the ‘‘first five to ten studies using the data-
son’s disease. Int J Ther Rehabil. 2011; 18(1):48-58.
charting form and meet to determine whether their
8. Nottelmann L, Jensen LH, Vejlgaard TB, Groenvold M. A
approach to data extraction is consistent with the new model of early, integrated palliative care: palliative
research question and purpose,’’ as suggested by rehabilitation for newly diagnosed patients with non-
Levac et al.28(p.6) Authors will be contacted for further resectable cancer. Support Care Cancer 2019;27(9):
information/clarification of the data where required, 3291–300.
as suggested by Arksey and O’Malley’s framework.29 9. Leedham K. District nurses’ views on the role of rehabilita-
tion in palliative care. Int J Palliat Nurs 1995;1(3):141–4.
Data analysis and presentation 10. Javier NM, Montagnini M. The role of palliative rehabilita-
The extracted data will be presented in diagram- tion in serious illness #364. J Palliat Med 2018;21(12):
matic or tabular form in a manner that aligns with 1808–9.
11. Barawid E, Covarrubias N, Tribuzio B, Liao S. The benefits of
the objective of this scoping review. A descriptive
rehabilitation for palliative care patients. Am J Hosp Palliat
summary will accompany the tabulated and/or
Med 2015;32(1):34–43.
charted results and will describe how the results 12. Javier NSC, Montagnini ML. Rehabilitation of the hospice
relate to the review’s objective and question. and palliative care patient. J Palliat Med 2011;14(5):638–48.
A summary of each article will include the 13. Hawley P. Barriers to access to palliative care. Palliat Care
author(s), year of publication, country of origin, 2017;10:1178224216688887.
purpose, population, sample size, methodology, con- 14. Hirvonen OM, Leskelä R-L, Grönholm L, Haltia O, Voltti S,
cepts of interest, and key findings relating to the Tyynelä-Korhonen K, et al. The impact of the duration of the
scoping review questions (Appendix III). palliative care period on cancer patients with regard to the
use of hospital services and the place of death: a retrospec-
Acknowledgments tive cohort study. BMC Palliat Care 2020;19(1):37.
15. Dahlin Y, Heiwe S. Patients’ experiences of physical therapy
The University Fernando Pessoa, Faculty of Health within palliative cancer care. J Palliat Care 2009;25(1):12–20.
Sciences, Porto and the Health Sciences Research 16. Olsson Moller U, Stigmar K, Beck I, Malmstrom M, Rasmus-
Unit: Nursing (UICISA: E), hosted by the Nursing sen BH. Bridging gaps in everyday life - a free-listing
School of Coimbra (ESEnfC) for their support. approach to explore the variety of activities performed
by physiotherapists in specialized palliative care. BMC Pall-
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SYSTEMATIC REVIEW PROTOCOL V. Parola et al.

Appendix I: Search strategy


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MEDLINE (PubMed)
Search conducted in December 2019
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Search Query Records retrieved


#1 ((((((((((((nurse[Title/Abstract] OR nurses[Title/Abstract])) OR nurse[MeSH Terms]) 796,268
OR Physicians[MeSH Terms]) OR (physician[Title/Abstract] OR physicians[Title/
Abstract])) OR social worker[MeSH Terms]) OR (social worker[Title/Abstract] OR
social workers[Title/Abstract])) OR psychologists[MeSH Terms]) OR (psychologist
[Title/Abstract] OR psychologists[Title/Abstract])) OR (physiotherapist[Title/
Abstract] OR physiotherapists[Title/Abstract])) OR physiotherapists[MeSH Terms])
OR (occupational therapist[Title/Abstract] OR occupational therapists[Title/
Abstract])) OR Occupational Therapists[MeSH Terms]
#2 (((rehabilitation[Title/Abstract]) OR Rehabilitation[MeSH Terms])) OR rehabilita- 403,760
tions[Title/Abstract]
#3 ((((hospice[Title/Abstract] OR hospices[Title/Abstract])) OR hospices[MeSH Terms]) 131,596
OR palliative care[MeSH Terms]) OR (palliative[Title/Abstract] OR palliatives[Title/
Abstract])
#4 (((((((((((((((nurse[Title/Abstract] OR nurses[Title/Abstract])) OR nurse[MeSH 387
Terms]) OR Physicians[MeSH Terms]) OR (physician[Title/Abstract] OR physicians
[Title/Abstract])) OR social worker[MeSH Terms]) OR (social worker[Title/Abstract]
OR social workers[Title/Abstract])) OR psychologists[MeSH Terms]) OR
(psychologist[Title/Abstract] OR psychologists[Title/Abstract])) OR (physiothera-
pist[Title/Abstract] OR physiotherapists[Title/Abstract])) OR physiotherapists
[MeSH Terms]) OR (occupational therapist[Title/Abstract] OR occupational ther-
apists[Title/Abstract])) OR Occupational Therapists[MeSH Terms])) AND
((((rehabilitation[Title/Abstract]) OR Rehabilitation[MeSH Terms])) OR rehabilita-
tions[Title/Abstract])) AND (((((hospice[Title/Abstract] OR hospices[Title/
Abstract])) OR hospices[MeSH Terms]) OR palliative care[MeSH Terms]) OR
(palliative[Title/Abstract] OR palliatives[Title/Abstract]))
#5 Filter: Since 01/01/2009 208
#6 Filters: Languages – Portuguese; Spanish; English 189
(((((((((((((((nurse[Title/Abstract] OR nurses[Title/Abstract])) OR nurse[MeSH
Terms]) OR Physicians[MeSH Terms]) OR (physician[Title/Abstract] OR physician-
s[Title/Abstract])) OR social worker[MeSH Terms]) OR (social worker[Title/
Abstract] OR social workers[Title/Abstract])) OR psychologists[MeSH Terms]) OR
(psychologist[Title/Abstract] OR psychologists[Title/Abstract])) OR (physiothera-
pist[Title/Abstract] OR physiotherapists[Title/Abstract])) OR physiotherapists
[MeSH Terms]) OR (occupational therapist[Title/Abstract] OR occupational
therapists[Title/Abstract])) OR Occupational Therapists[MeSH Terms])) AND
((((rehabilitation[Title/Abstract]) OR Rehabilitation[MeSH Terms])) OR rehabilita-
tions[Title/Abstract])) AND (((((hospice[Title/Abstract] OR hospices[Title/
Abstract])) OR hospices[MeSH Terms]) OR palliative care[MeSH Terms]) OR
(palliative[Title/Abstract] OR palliatives[Title/Abstract])) Filters: Publication date
from 2009/01/01; Portuguese; English; Spanish

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SYSTEMATIC REVIEW PROTOCOL V. Parola et al.

Appendix II: Data extraction instrument


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Author(s)
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Year of publication
Country of origin
Aims
Context (palliative care unit or hospice)
Palliative rehabilitation intervention
Duration of the intervention
Frequency of the intervention
Concept(s) of significance to the review question
Domain
Health care professional (implementation)
Study population (oncology and non-oncology
patients) and sample size

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SYSTEMATIC REVIEW PROTOCOL V. Parola et al.

Appendix III: Data presentation templates


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Template data presentation for Questions 1 and 2


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Palliative rehabilitation intervention


Respiratory Cardiac Physical
Domains kinesiotherapy rehabilitation rehabilitation Gait reeducation (. . .)
Physical
Cognitive
Emotional

Template data presentation for Question 3

Palliative rehabilitation intervention


Respiratory Cardiac Physical
Characteristics of intervention kinesiotherapy rehabilitation rehabilitation Gait reeducation (. . .)
Duration of intervention
Frequency of intervention
Dose

Template data presentation for Question 4

Palliative rehabilitation intervention


Respiratory Cardiac Physical
Health care professionals kinesiotherapy rehabilitation rehabilitation Gait reeducation (. . .)
Physicians
Registered nurses
Physiotherapists
Psychologists
Social workers
Occupational therapists
(. . .)

Template data presentation for Question 5

Palliative rehabilitation intervention


Respiratory Cardiac Physical
Advanced diseases kinesiotherapy rehabilitation rehabilitation Gait reeducation (. . .)
Oncology
Non-oncology

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