Facilitators and barriers of relatives' involvement in nursing care decisions and self-care of patients with acquired brain injury or malignant brain tumour: A scoping review protocol.

INTRODUCTION: Involving relatives can contribute to better quality of care and treatment, and lead to higher satisfaction with hospitalisation in the patients, relatives and healthcare professionals. Nurses play an important role in developing a trusting relationship and facilitating relatives' involvement, since they are around the patient and relatives all day. Thus, involvement is central to the nursing practice. However, involving relatives seems complex and multifaceted with many possible facilitators and barriers to nurses.'
OBJECTIVE: The objective of this scoping review is to identify and map the available evidence concerning possible facilitators and barriers to nurses involving relatives in the course of treating disease in individuals who have sustained an acquired brain injury or malignant brain tumour in all settings. METHODS AND ANALYSIS: The proposed scoping review will be performed following the Joanna Briggs Institute's (JBI) methodology for scoping reviews. Indexed and grey literature in English, Scandinavian or German languages from 2010 to the present will be considered. The searches will be conducted using bibliographic databases: Medline (via PubMed), CINAHL (via EBSCO) and EMBASE (via OVID). Two reviewers will independently screen the studies and determine if their title, abstract and full text meet the study's inclusion criteria. In case of disagreement, a third and fourth reviewer will be consulted. A customised data extraction form will be used to extract data from the included studies. The results will be presented in tabular form, accompanied by a narrative summary related to the objective of the present scoping review. This scoping review will consider studies that involve nurses caring for individuals with an acquired brain injury or malignant brain tumour in all settings (community, primary care, health care centres, hospital and long-term care institutions). Studies will be included if they describe any kind of facilitators or barriers to involving relatives, and the review will consider all study designs.

Introduction

It is estimated that the incidence for traumatic brain injury (TBI) in the US and Europe is 30 per 100,000 persons per year, and globally, stroke affects an estimated 17 million people per year [1]. Acquired brain injury (ABI) is an injury to the brain that has occurred after birth but is not related to congenital defect or degenerative disease. The origin of the injury can be traumatic or non-traumatic (e.g. stroke) [2]. The peak age of TBI is between the ages of 15–24 years and 75 years and older [3]. Patients with severe ABI are often affected in several areas (functional, health, personal and environmental) that impair their ability to collaborate with health care professionals (HCPs) and participate in making decisions about their own treatment, rehabilitation and/or future. Rehabilitation of patients with ABI, therefore, differs from rehabilitation of many other patient groups and the collaboration with their relatives is particularly important [4]. Malignant brain tumour (MBT) often occurs between the ages of 40–70 years, and has an estimated incidence in adults of 7.3 cases per 100,000 persons [5, 6]. Patients with MBT develop symptoms for months to days due to the mass effect of the tumour itself and/or additional brain swelling caused by oedema. The most common general symptoms are headache, nausea and fatigue. Later, the general symptoms can worsen into vomiting, balance difficulties, epileptic seizures and various cognitive problems [7]. The patient’s path is often characterised by several examinations within a short time span, from referral by a general practitioner to diagnostic work-up and initial treatment [8]. As a consequence, they experience many contacts with different hospital departments and HCPs, often in different hospitals, in a time filled with waiting, anxiety, loss of control and uncertainty for the future [9].

Research has shown that patients with MBT need psychosocial support interventions that address their individual needs, a network to relieve them and for the HCPs to recognise these support systems as an important resource [10]. Thus, sustaining an ABI or a MBT has major consequences for patients and their relatives, and has shown to result in familial strain.

Involving patients and their relatives in their treatment and care is required according to existing health policies in most western countries [11]. Unfortunately, there is a range of different interpretations of how and to which patients and relatives can be involved in their treatment and the decision-making process. Further, research literature refers to different definitions and terminologies as partnership, involvement and shared decision-making [12]. In the instant protocol, the term involvement will be used, as it refers to an active doing on the individual level [12]. It is well-known that effective involvement requires that HCPs have sufficient knowledge of patients’ and relatives’ wishes for involvement, and that patients and relatives are genuinely able to influence decision-making processes [13]. Furthermore, trust and respect between HCPs and patients/relatives are important for participating in making decisions about care [13].

Nurses are constantly around patients and relatives and, therefore, are well-positioned to establish a trustful relationship and ensure safe, affordable and respectful care [14]. Establishing a trusting relationship includes five core elements, explicitly through communication by the nurse to the patient/relative: focusing, knowing, trusting, anticipating and evaluating [15]. Focusing nursing care on establishing a trusting relationship with patients and relatives in the initial stage of hospitalisation may contribute to improved practices of involvement in the rehabilitation process, where such involvement is based on identifying the relative’s needs and where support could thereby be delivered in a more tailored manner [16].

Another crucial aspect to successful involvement is understanding that relatives and nurses have different spheres of expertise. The nurse is an expert in nursing, while the relatives, in most cases, must be considered experts in the patient’s life, able to contribute important, person-specific knowledge of the patient that the nurses do not possess. Previous research has illuminated different facilitators and barriers for involvement. Guldager et al. found relatives’ differential and unequal resources function as facilitators and barriers [16]. Facilitators for involvement include participating in nursing care situations, the possibility of being present during hospitalisation, the relationship with the providers, experience with illness, dedication and proactivity [16]. On the contrary, being reactive, not participating in nursing care situations, being unable to express one’s own wants and needs and minimal flexibility from the patient’s workplace are barriers to involvement [16]. Fisher et al. suggest increasing relatives’ competences in order to address unmet informational and practical support needs that they might have, but also to benefit individuals with a brain injury by optimising clinical outcomes. However, relatives of patients with a TBI or MBT often suffer from feelings of anxiety and depression, which may potentially create barriers to involvement because of decreased energy and capacity to positively impact the process [17]. Keatinge et al. found that patients considered communication to be the principal barrier to successful partnerships between patients and relatives and concluded that nurses’ lack of communication skills was a barrier to involvement [18]. Lastly, the organisational and work environment can negatively influence patient and relative involvement with lack of time being identified as a barrier [13].

Despite the fact that research shows that involving relatives contributes to better treatment for patients [19], affects their psychological and emotional well-being [20], and ultimately has a positive impact on the safety of patient care [20], it still seems like there are many facilitators and barriers to involvement. Further, it is unclear if the HCPs have the competencies to meet the relatives’ diverse needs and preferences for involvement, or if involvement is just a political ideal.

A preliminary search for existing scoping and systematic reviews on the topic has been conducted in the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and in PubMed in February 2021. No relevant completed or ongoing systematic or scoping reviews were found.

Aim and research question

The objective of this scoping review is to identify and map the available evidence on possible facilitators and barriers to nurses’ involvement of relatives throughout the course of the patients’ ABI or MBT, in all settings.

This scoping review’s research question is: what kind of facilitators and barriers do nurses face in involving the relatives of individuals with ABI or MBT?

Methods

We will conduct a scoping review to identify and map the evidence concerning involving relatives of patients with ABI or MBT in accordance with the Joanna Briggs Institute’s (JBI) methodology for scoping reviews [21]. A scoping review is suitable for our topic area as it is defined as ‘a form of knowledge synthesis that addresses an exploratory research question aimed at mapping key concepts, types of evidence and gaps in research related to a defined area or field by systematically searching, selecting and synthesizing knowledge [21]. In our scoping review, at least two independent reviewers will participate in an iterative process of screening the literature, paper selection and data extraction. Disagreements between the reviewers will be resolved by discussion until consensus is reached or after consultation with the research team, when needed. Results will be reported with descriptive statistics and diagrammatic or tabular displayed information, accompanied by narrative summaries as explained in the JBI guidelines [22].

Inclusion criteria

Population

This review will include studies that involve registered nurses caring for individuals with an ABI or MBT and their relatives in all settings.

Concept

The overarching concept of interest for the scoping review is the kind of possible facilitators and barriers that nurses face when involving the relatives of patients with ABI or MBT in all settings. We expect to identify text representing both concepts of facilitators and barriers independently; but also, a relationship between the two. Thus, this review will consider studies that provide information about how nurses experience involving relatives of patients with ABI or MBT in their nursing care. Articles focusing on nurses caring for patients with neurological diseases such as Parkinson’s, Alzheimer’s, dementia or multiple sclerosis will be excluded.

Context

This review will consider studies that involve possible facilitators and barriers towards nurses’ involvement of relatives of individuals with ABI or MBT in all settings. The review has no limitations to a particular country or healthcare system.

Eligible study designs and studies

This scoping review will consider all types of quantitative, qualitative or mixed-methods studies, reports or theses describing facilitators and barriers to nurses involving the relatives of individuals with ABI or MBT. Grey literature that includes this information, including expert opinions and editorials, will also be included.

Databases and additional sources

We will search Medline (via PubMed), CINAHL (via EBSCO) and EMBASE (via OVID).

Search strategy

A three-step search strategy will be used. An initial search of the databases PubMed, CINAHL and EMBASE for facilitators and barriers to nurses’ involving relatives of individuals with ABI or MBT will be conducted. Afterwards, an analysis was conducted of text in both the title and abstract of retrieved articles and of the index terms used to describe the articles. Key terms were determined through discussions between two authors (RG and IP) and a university hospital librarian.

A second search using all keywords and index terms will be undertaken across all relevant databases. The search will be iterative as reviewers become more familiar with the evidence bases. Additional useful keywords, sources and search terms will be incorporated into the search strategy. Consultation with a university hospital librarian will guide the search’s design and refinement. The search will use keywords and Medical Subject Headings (MeSH) terms (Table 1). The search strategies will be created specifically for each database using relevant index and free text terms.

Table 1

Search terms.

Participants/population	Concept	Context
Nurse	Barriers	Brain injuries
Registered nurse	Facilitators	Acquired brain injury
Practice nurse	Motivation	Stroke
License nurses	Participation	Brain Neoplasms
	Patient participation	Glioblastoma
	Involvement
	Family needs
	Decision making, shared
	Shared decision making
	Care
	Caring
	Neuroscience nursing
	Nurses role
	Patient participation
	Family practice

The search will cover studies published in English, Scandinavian or German from January 2010 to the present in order to ensure that included reports are relevant to current clinical practice and legislation. A full search strategy for PubMed database is provided (Table 2).

Table 2

Initial search strategy for Medline (via PubMed).

Search	Query	Records retrieved
#1 Participants/Population	((((Nurse) OR (nurse)) OR (registered nurse)) OR (practice nurse)) OR (license nurse)	163,202
#2 Content	(((((((((((((((Barriers)) OR (Facilitators)) OR (Motivation)) OR (Participation)) OR (Patient participation)) OR (Involvement)) OR (Family needs)) OR (Decision making)) OR (Shared decision making)) OR (care)) OR (caring)) OR (Neuroscience nursing)) OR (Patient participation)) OR (Family practice)	397,920
#3 Context	((((brain injury) OR (Acquired brain injury)) OR (Stroke)) OR (Brain Neoplasms)) OR (Glioblastoma)	39,728
#4	((((((brain injury) OR (Acquired brain injury)) OR (Stroke)) OR (Brain Neoplasms)) OR (Glioblastoma) AND (2010/1/1:2021/9/30[pdat])) AND ((((((((((((((() OR (Barriers)) OR (Facilitators)) OR (Motivation)) OR (Participation)) OR (Patient participation)) OR (Involvement)) OR (Family needs)) OR (Decision making)) OR (Shared decision making)) OR (care)) OR (caring)) OR (Neuroscience nursing)) OR (Patient participation)) OR (Family practice) AND (2010/1/1:2021/9/30[pdat]))) AND (((((Nurse) OR (nurse)) OR (registered nurse)) OR (practice nurse)) OR (license nurse) AND (2010/1/1:2021/9/30[pdat]))	212

In the third step, the reference list of identified reports and articles will be appraised and screened for additional studies. The titles and abstracts of all identified studies that are potentially eligible for inclusion in the review will be screened, and full-text versions of included articles will be obtained.

All databases will be exported into EndNote X8.1 software (Clarivate Analytics, PA, USA). Duplicates will be removed before each entry is screened for eligibility. Then, all of the titles and abstracts of the retrieved studies will be uploaded to the Covidence systematic review software (Veritas Health Innovation Ltd, Melbourne, Australia) for screening [23].

Study selection

Study selection will be conducted in two stages. In the first stage, five independent reviewers (RG, SN, LA, IP and MI) will screen the titles and abstracts against the inclusion criteria. In the second stage, the entire research team will conduct a final review of all potentially relevant, full-text articles that are retrieved and screened for inclusion. Any disagreements will be resolved through discussion and consensus with the entire research team. The systematic literature search will be summarised and presented in a PRISMA-ScR flow chart as suggested by JBI [22].

Data extraction

As recommended by JBI [22] the data extraction will involve two independent reviewers using a draft data extraction. Expected extraction fields will include:

Author(s)

Year of publication

Origin/country of origin

Setting

Study population

Methodology/methods

Facilitators to involvement of relatives from the nurses’ perspectives

Barriers to involvement of relatives from the nurses’ perspectives

Context

The data extraction tool will be pilot tested on three articles, and the team will discuss and decide on any required revisions of the tool (after testing). Any modifications will be detailed in the final scoping review. A third and fourth reviewer will resolve any disagreements between the reviewers. Authors of studies will be contacted to request missing or additional data, where required.

Presentation of the results

As suggested by JBI, the extracted data will be presented in a diagrammatic or tabular form in a manner that aligns with the objective of this scoping review [22] to identify and map the available evidence concerning possible facilitators and barriers to nurses’ involvement of relatives of individuals with ABI or MBT in all settings. A narrative summary will accompany the tabulated and/or charted results, which will describe how the results relate to the review’s question (Table 3) [22]. A data presentation template will be developed specifically for this scoping review.

Table 3

Data presentation template.

Research question: What kind of possible facilitators and barriers towards nurses’ involvement of relatives through the course of disease of individuals with ABI or MBT in all settings?
Author/year of publication/ country of origin	Aim	Methods	Design	Characteristics of facilitators and barriers for involvement		Context	Key findings
				Facilitators	Barriers

Transfer Alert

This paper was transferred from another journal. As a result, its full editorial history (including decision letters, peer reviews and author responses) may not be present.

25 Jan 2022

Facilitators and barriers towards nurses’ involvement of relatives: a scoping review protocol

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Reviewer #1: Dear Editor,

Thank you for the opportunity to provide a review of Manuscript PONE-D-21-20624 entitled "Facilitators and barriers towards nurses’ involvement of relatives: a scoping review protocol". My comments relate primarily to the adequacy of the implementation and reporting of epidemiologic and statistical procedures.

The quality of the technical English is appropriate and did not affect my understanding of the manuscript.

# Major Issues

*IMPORTANT* Scoping reviews are underdone systematic reviews. This is seen as an excuse to cut corners and provide substandard processes, all in an effort to privilege speed, cost, or some other non-pertinent reason. A review is either performed systematically or it is not. In the present case, the protocol misses out on several important and crucial methodological steps. If followed, the resulting research will be substandard and inutile.

First, the authors provide no process of synthesis. What theories or frameworks guide their assessment of the evidence? Without a process of synthesis, then the resulting information is no better than a tally or a list of facilitators and barriers. This is hardly research, since the authors will simply be regurgitating information found in the feeder studies. A prime example of this is the dummy table provided by the authors as a guide to the presentation of results. This table is trivial as it simply lists each item tallied by the authors. There is no effort to apply a framework to the results. The nursing literature is replete with significant frameworks, theories or models on which to synthesise the results. That the authors have not cited any is quite disturbing.

Second, the authors do not provide a method of assessing the quality of the studies. The assumption they are using, in effect, is that all the studies were conducted equally well. This is ridiculous.

Third, the authors do not provide a method of understanding the degree of differences between the studies. An example of such differences is context. The involvement of relatives by nurses is highly contextual. For example, Hospital A might have existing programs designed to involve relatives in patient care. Thus, data from Hospital A will list a set of facilitators and barriers that will be quite different from other settings and will be quite inapplicable to others because it depends on the prior existence of such programs. The existence of such environmental factors have to do with the context of the research. This is undefined and ignored.

I am unable to support the approval of this manuscript for publication in the journal.

Thank you.

Reviewer #2: The title is incomplete.. involvement of relatives in what?

The abstract is not organized. you start with introduction, then objectives. inclusion criteria should be part of the methods.

Write in full first before abbreviating - see under introduction, line 1, TBI, ABI,

Consider using the term participation rather than involvement. relatives may be involved but not participate in the patient care.

Conference abstracts and papers and reports regarding policies and strategies in use by professional bodies or organizations will be excluded, please give reason for excluding them.

Methods - indicate the search terms and the criteria you will use to appraise the selected studies.

Table 1: The mesh search terms are not exhaustive. consider adding registered nurses, registered nurse, practice nurse, license nurses. Also for involvement consider adding participation, communication, decision making, care, caring

Reviewer #3: The scoping review protocol was generally good and presented in line with the PRISMA checklist for scoping review(Tricco et al., 2018). However, the reviewer may consider making changes to the title to include or account for the disease condition highlighted in the body of the scoping review as the participants aspect of the PICO framework. This would enhance title completion and improve readers’ experience. There is still, not a mention of the use of critical appraisal tool for quality appraisal. Also, there is no evidence of the data search flow chart in the protocol. This can improve the pictorial or construct validity of the scoping review. The mention of search databases, the dates of publication of interest, and the key search term provided offers readers insight into how search outcome result where obtained: this is good practice needed as prove of reliability. It also means that research outcome can be reproduced elsewhere. Otherwise, the registered protocol is well written in a clear, simple, and concise manner for readers' understanding.

Reference scoping review checklist

Tricco, AC, Lillie, E, Zarin, W, O'Brien, KK, Colquhoun, H, Levac, D, Moher, D, Peters, MD, Horsley, T, Weeks, L, Hempel, S et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018,169(7):467-473. doi:10.7326/M18-0850.

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Reviewer #1: No

Reviewer #2: Yes: Dr. Haddy Tunkara Bah

Reviewer #3: Yes: Patience James

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17 Feb 2022

Title of the Manuscript: Facilitators and barriers towards nurses’ involvement of relatives: a scoping review protocol

Manuscript Number: PONE-D-21-20624

Reviewer 1

Comment 1: *IMPORTANT* Scoping reviews are underdone systematic reviews. This is seen as an excuse to cut corners and provide substandard processes, all in an effort to privilege speed, cost, or some other non-pertinent reason. A review is either performed systematically or it is not. In the present case, the protocol misses out on several important and crucial methodological steps. If followed, the resulting research will be substandard and inutile.

Authors’ Response: Thank you for the comment. However, we argue as Munn and Levac that scoping reviews are useful for exploring emerging evidence when it is still unclear what other, more specific questions can be posed and valuably addressed by a more precise systematic review (1, 2). We agree that a scoping review need to be rigorously conducted, transparent and trustworthy. To ensure this we refer to the JBI’s Guidance for the conduct of a Scoping Review(3). We have rewritten the method section to make this clearer.

Change to Text:

We will conduct a scoping review to identify and map the evidence concerning the involvement of relatives in patients with ABI or MBT in accordance with the Joanna Briggs Institute’s (JBI) methodology for scoping reviews. A scoping review is suitable for our topic area as scoping reviews is defined as ‘a form of knowledge synthesis that addresses an exploratory research question aimed at mapping key concepts, types of evidence, and gaps in research related to a defined area or field by systematically searching, selecting and synthesizing knowledge’ .(4) In our scoping review at least two independent reviewers will participate in an iterative process of screening the literature, paper selection and data extraction. Disagreements between the reviewers will be resolved by discussion until consensus is reached or after consultation with the research team if needed. Results will be reported with descriptive statistics and diagrammatic or tabular displayed information, accompanied by narrative summaries as explained in the JBI guidelines (ref).

Comment 2: First, the authors provide no process of synthesis. What theories or frameworks guide their assessment of the evidence? Without a process of synthesis, then the resulting information is no better than a tally or a list of facilitators and barriers. This is hardly research, since the authors will simply be regurgitating information found in the feeder studies. A prime example of this is the dummy table provided by the authors as a guide to the presentation of results. This table is trivial as it simply lists each item tallied by the authors. There is no effort to apply a framework to the results. The nursing literature is replete with significant frameworks, theories or models on which to synthesise the results. That the authors have not cited any is quite disturbing.

Authors’ Response:

Thank you for your comment. Please see the comment above.

Comment 3: Second, the authors do not provide a method of assessing the quality of the studies. The assumption they are using, in effect, is that all the studies were conducted equally well. This is ridiculous.

Authors’ Response:

Thank you for your comment. According to Munn et.al (2018) It is not within the remit of a scoping review to assess quality of the study or to produce a critically appraised answer to a particular question(1). As Munn states ‘An assessment of methodological limitations or risk of bias of the evidence included within a scoping review is generally not performed’(1). The scoping review methodology is chosen because it is suitable when the aim is to identify and map the available evidence concerning on what kind of possible facilitators and barriers towards nurses’ involvement of relatives to individuals with acquired injury or malignant brain tumour.

Comment 4:

Third, the authors do not provide a method of understanding the degree of differences between the studies. An example of such differences is context. The involvement of relatives by nurses is highly contextual. For example, Hospital A might have existing programs designed to involve relatives in patient care. Thus, data from Hospital A will list a set of facilitators and barriers that will be quite different from other settings and will be quite inapplicable to others because it depends on the prior existence of such programs. The existence of such environmental factors have to do with the context of the research. This is undefined and ignored.

Authors’ Response:

Thank you for your comment. As we are interested in what kind of possible facilitators and barriers towards nurses’ involvement of relatives through the course of disease to individuals with acquired injury or malignant brain tumour we will include studies from all settings. To be able to identify possible environmental factors that may influence facilitators and barriers for involvement we have added context to expected extraction fields on P 5. L 180 and to the data presentation template and will extract data related to context/setting (ICU, in-outpatient clonic, primary health care, nursing home ect.).

Reviewer 2

Comment 1: The title is incomplete.. involvement of relatives in what?

Authors’ Response: Thank you for this comment. We have been more specific about the ‘what’

Change to Text: Facilitators and barriers towards nurses’ involvement of relatives in decision making and daily life activities through the course of disease of patients with an acquired brain injury or malignant brain tumour.: a scoping review protocol

Comment 2: The abstract is not organized. you start with introduction, then objectives. inclusion criteria should be part of the methods.

Authors’ Response: Thank you for this comment. The abstract is now organized

Change to Text:

Comment 3: Write in full first before abbreviating - see under introduction, line 1, TBI, ABI,

Author’s Response: Thank you for pointing this out. This have been corrected on line 1 and line 35

Change to Text:

Comment 4: Consider using the term participation rather than involvement. relatives may be involved but not participate in the patient care.

Author’s Response: Thank you for your suggestion. As stated on P. 2, line 54 we use the terminology involvement, as it refers to an active doing on the individual level. As we are not only interest in involvement understood as participation in e.g. patient care, but involvement through the course of disease, we maintain the term involvement.

Change to Text:

Comment 5:

Conference abstracts and papers and reports regarding policies and strategies in use by professional bodies or organizations will be excluded, please give reason for excluding them.

Author’s Response: Thank you for your comment. In the methods sections Eligible study designs and studies (P: 4)

we have written that grey literature will be included. Since conference abstracts and papers regarding policies and strategies can be considered as grey literature, we have deleted the sentence

Change to Text:

Comment 6: Methods - indicate the search terms and the criteria you will use to appraise the selected studies.

Author’s Response: Thank you for your comment. We have created a table 1, that shows the search terms and where the MesH terms are highlighted in bold.

Change to Text:

Comment 7: Table 1: The mesh search terms are not exhaustive. consider adding registered nurses, registered nurse, practice nurse, license nurses. Also for involvement consider adding participation, communicateon, decision making, care, caring

Author’s Response: Thank you for your suggestions. We have added the suggested terms and have updated the initial search (See table 2)

Change to Text: N/A

Reviewer 3

Comment 1: The scoping review protocol was generally good and presented in line with the PRISMA checklist for scoping review (Tricco et al., 2018). However, the reviewer may consider making changes to the title to include or account for the disease condition highlighted in the body of the scoping review as the participants aspect of the PICO framework. This would enhance title completion and improve readers’ experience.

Author’s Response: Thank you for your comment. We have included the disease conditions as suggested.

Change to Text: Facilitators and barriers towards nurses’ involvement of relatives through the course of disease of individuals with an acquired brain injury or malignant brain tumour.: a scoping review protocol

Comment 2: There is still, not a mention of the use of critical appraisal tool for quality appraisal. Also, there is no evidence of the data search flow chart in the protocol. This can improve the pictorial or construct validity of the scoping review.

Author’s Response: Thank you for your comment. According to Munn et.al (2018) It is not within the remit of a scoping review to assess quality of the study or to produce a critically appraised answer to a particular question(1). As Munn states ‘An assessment of methodological limitations or risk of bias of the evidence included within a scoping review is generally not performed’(1). The scoping review methodology is chosen because it is suitable to give an indication of the amount of literature as well as and studies available and further to clarify concepts(1). On page 5 we write that the systematic literature search will be summarized and presented in a PRISMA-ScR flow chart as suggested by JBI. (3)

Comment 3: The mention of search databases, the dates of publication of interest, and the key search term provided offers readers insight into how search outcome result where obtained: this is good practice needed as prove of reliability. It also means that research outcome can be reproduced elsewhere

Author’s Response: Thank you for your comment. We have inserted a Table 1, that shows search key search terms. In addition, we have provided information on databases and additional sources on page 4, line 136-137 and dates of publication of interest on page 5, line 152-154

Comment 4:

Otherwise, the registered protocol is well written in a clear, simple, and concise manner for readers' understanding.

Author’s Response: Thank you very much for this comment

1. Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology. 2018;18(1):143.

2. Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implementation Science. 2010;5(1):69.

3. Peters MDJ GC, McInerney P, Munn Z, Tricco AC, Khalil, H. . Chapter 11: Scoping Reviews. . In: Aromataris E MZ, editor. JBI Manual for Evidence Synthesis. Adelaide: JBI2020.

4. Colquhoun HL, Levac D, O'Brien KK, Straus S, Tricco AC, Perrier L, et al. Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014;67(12):1291-4.

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5 Jul 2022

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3 Aug 2022

Academic Editor

Robert Didden

Dear Robert Didden,

I hereby send an original research paper entitled Facilitators and barriers of relative’s involvement in nursing care decisions and self-care of patients with acquired brain injury or malignant brain tumour: A scoping review protocol for publication in PLOS ONE. The article is co-authored by Sara Nordentoft, Maria Vilhelmsen, Lena Aadal, Mia Loft and Ingrid Poulsen.

The reviewers made some very useful comments, and we have incorporated their valuable suggestions into the previous version of the manuscript. We hope that this revised manuscript is now suitable for publication in PLOS ONE and look forward to receiving your response.

Sincerely yours

On behalf of the research-group

Rikke Guldager

Submitted filename: 290722 Response to Reviewers.docx

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4 Aug 2022

Facilitators and barriers of relatives’ involvement in nursing care decisions and self-care of patients with acquired brain injury or malignant brain tumour: A scoping review protocol.

PONE-D-21-20624R2

Dear Dr. Guldager,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

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Additional Editor Comments (optional):

Reviewers' comments:

10 Aug 2022

PONE-D-21-20624R2

Facilitators and barriers of relatives’ involvement in nursing care decisions and self-care of patients with acquired brain injury or malignant brain tumour: A scoping review protocol.

Dear Dr. Guldager:

I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department.

If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org.

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