What is a meaningful life for persons with acquired neurological impairments? A scoping review protocol.

OBJECTIVE: This scoping review explores the constitution of a meaningful life as perceived by adults with acquired neurological impairment following an injury or a disease.
INTRODUCTION: A neurological injury or disease imposes extensive life changes on the affected person and his or her close relatives. Including the patients' perception of a meaningful life is crucial to facilitate adjustment of any rehabilitation initiatives to the patients' wishes, hopes, needs, and preferences. Even so, the descriptions and common traits of a meaningful life from the impaired person's perspective are scarcely covered in the literature. Hence, a scoping review of existing knowledge is needed to facilitate quality rehabilitation and research initiatives. INCLUSION CRITERIA: All studies, regardless of their design, are included provided they describe a meaningful life as considered or experienced by persons aged 18 years or more with neurological impairment.
METHODS: A PICo framework defines the search algorithms used in the databases MEDLINE, Cinahl, PsycINFO and Embase. Using Covidence, the scoping review systematically organizes the identified articles to provide a broad description of the study phenomenon. Furthermore, titles, abstracts, and full-text articles are screened independently by two reviewers to determine if they meet the inclusion criteria. In case of disagreement, a third and fourth reviewer are consulted. The scoping will be reported according to the PRISMA- SCR checklist.

Introduction

A neurological disease or injury imposes extensive life changes on the impaired person and his/her close relatives [1-3]. Neurological impairment covers a wide range of illnesses and injuries. Depending on the severity and type of impairment the person can be more or less affected. For instance, adults with acquired brain injury (ABI) often experience changes in sensory-motor, cognitive and psychological functions affecting the quality and meaningfulness of life [4]. For persons with a spinal cord injury cognitive functions are maintained. Nevertheless, this group may suffer from tetraplegia meaning that they are unable to use both arms and legs sufficiently leaving them highly dependent on others. Multiple Sclerosis, being a progressive illness, affects the person’s function and abilities in a descending spiral. Common for all there are wide range of negative and severe psycho-social consequences, including a low quality of life, low self-determination, low participation and autonomy, low attachment to the labor market, and risk of stigmatizing [5-11]. Furthermore, physical impairment and reduced physical mobility and activity are additional well-known consequences that may inhibit the return to former everyday activities [12].

Rehabilitation may help a person to adjust and redefine everyday activities following neurological impairment [13]. To underpin the patients’ motivation to fully engage in highly intensive rehabilitation programs, it is essential to establish what the affected person finds important [14]. Hence, including patients’ wishes, hopes, and preference, and adjusting activities to new realities are of paramount importance to the rehabilitation process [15,16] and central to successful rehabilitation [17,18].

According to the World Health Organization (WHO), rehabilitation is defined as “(…) appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life” [19,20].

With this definition, the WHO does not directly address a meaningful life. They do, however, highlight the need to attain full inclusion and participation in all aspects of life. Meyer et al. (2020) [21] described the problematic lack of a unified definition of rehabilitation, specifying that the aim of rehabilitation is the optimization of aspects of functioning, especially social participation, independence or self-determination, or quality of life as experienced by the individual. The aspect of a personal, perceived, and experienced measure is even more explicit in Denmark where a meaningful life is described as the end point of the rehabilitation process [22-24]. Moreover, a meaningful life remains the ultimate goal of rehabilitation according to the second version of the Danish White Book on rehabilitation, which will be published in February 2022.

Several studies have indicated that person-centered rehabilitation and increased focus on the patient’s perception of meaningful life improve the outcomes for the individual, including their quality of life [25-29]. Furthermore, such a focus may encourage persons to engage more fully in their rehabilitation process, leading to individual support and efforts being adjusted further to the individual’s wishes, hopes, and needs [26]).

Despite the positive outcome achieved by including the individual’s preferences, little is known about which aspects and elements are commonly perceived as meaningful by persons with neurological impairments. The content of the term ’meaningful life’ is often used in different contexts [22,23]. However, there is neither consensus about the content of a meaningful life nor a clear definition. A preliminary search for existing scoping reviews and systematic reviews on the topic has been conducted in MEDLINE and the Cochrane Database of Systematic Reviews. No relevant systematic or scoping reviews were found. Hence a scoping review is warranted to summarize and describe what individuals with neurological impairment experience as a meaningful life.

Aim

To identify how a meaningful life is perceived by adults with acquired neurological impairments.

Materials and methods

The scoping review will be conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews [30]. Further, the scoping review will be reported using the scoping review PRISMA-SCR checklist. The checklist contains 20 essential reporting items and 2 optional items to include when completing a scoping review [31].

An interdisciplinary team of researchers within the field of neurological rehabilitation will systematically identify, retrieve, review, and synthesize international evidence of relevance to elaborate on the phenomenon of meaningful life with a neurological impairment.

Inclusion criteria

Participants

Data are included when reflecting first-hand experiences of persons > 18 years with an acquired neurological impairment. Children may have another lived experience and understanding of a meaningful life. Furthermore, they are under the influence of guardians and their perception of a meaningful life. Therefore, studies with children are not included. Nevertheless, it may not be possible to detect those who acquired their impairment under the age of 18 if this is not stated in the studies. In this case, they are included with their adult perspective. Studies are included when they provide perspectives from patients with progressive conditions such as e.g. multiple sclerosis and patients with acquired impairment (e.g. stroke, SCI, TBI).

Context

This review is not limited to a particular country or healthcare system. The review will consider studies conducted in all settings (e.g. rehabilitation centers, primary care, long-term care institutions, at home, in the municipalities, or other care facilities).

Studies published in English, Danish, Swedish, and Norwegian will be included. Studies are not limited by publication year.

Information sources

All studies, regardless of their design (quantitative, qualitative, or mixed-methods studies) and quality, are included provided they describe a meaningful life as considered or experienced by patients and persons with neurological impairments. In addition, systematic reviews that meet the inclusion criteria are considered, depending on the research question. Grey literature including reports, expert opinions and editorials are also considered for inclusion in this scoping review.

Search strategy

The search strategy is developed in collaboration with a research librarian. The first step will include an initial limited search of MEDLINE, CINAHL, PsycINFO, and Embase to identify articles on the topic. The text words contained in the titles and abstracts of relevant articles, and the index terms used to develop a PICo (Population, Phenomenon of Interest, Context) [32] to describe the articles and to develop a full search strategy (see S1 Appendix). The Population (P) is "Patients with a neurological injury or illness. The phenomenon of interest (I) is meaningful life and the Context (Co) is rehabilitation. The search strategy, including all identified keywords and index terms, is adapted for each of the included database MEDLINE, CINAHL, PsycINFO, and Embase and/or information source. The third step is to use the reference list of all included sources of evidence is screened for additional studies (S1 Appendix shows an example of the search).

Exclusion criteria

Studies will be excluded if they describe a meaningful life from the perspective of children younger than 18 years, persons who have another illness than neurological impairment or studies published in other languages than English or Scandinavian.

Data extraction process and critical appraisal

Following the search, all identified citations will be collected and uploaded into EndNote (X9.2/2020) and duplicates will be removed. Any potentially relevant sources will be retrieved in full and their citation details will be imported into Covidence [33] for systematic review management. Each step of the review process will be conducted independently by two reviewers. In case of disagreement, consensus is established by discussion between the two reviewers. Alternatively, a third and fourth reviewer are consulted. Firstly, titles and abstracts will be assessed to determine if the studies comply with the inclusion criteria. Secondly, the full text of selected citations is assessed in detail against the inclusion criteria. Reasons for exclusion of full text sources of evidence that do not meet the inclusion criteria are recorded and reported in the scoping review.

Included studies are evaluated using a design specific quality assessment template i.e. the appropriate CASP checklist [34]. Furthermore, a data extraction template developed and pilot tested by the reviewers will contribute to ensuring a systematic data collection and analysis.

The results of the search and the study in- and exclusion process will be reported in full with reasons for exclusions at each stage in the final scoping review and presented in a PRISMA-ScR flow diagram [31].

Data analysis and presentation

Using Covidence [33], data extraction will involve all authors using a draft data extraction tool. Independent extraction will be the following data from the articles: citations (authors, title, publication year, and journal), country (of origin), sample size, study design, population, study aim, and extracted relevant data. Data analysis will be conducted at physical meetings between all authors. The extracted data will be presented in a diagrammatic or tabular form in a manner that aligns with the objective of this scoping review. An inductive narrative summary will accompany the tabulated and/or charted results, which will describe how the results relate to the review’s question.

Ethical considerations and declarations

This study will not include participants and will be conducted in accordance with the Helsinki II Declaration and Ethical Guidelines for Nursing Research in the Nordic Countries.

Study status and timeline

Fig 1 shows the progress and of the scoping review.

Fig 1

Timeline of the development of the scoping review.

Discussion

This scoping review will provide knowledge on the patient perspective on meaningful aspects of life. This is essential when health professionals wish to "enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life" as stated by WHO [20]. With the knowledge of this scoping review rehabilitation can become more qualified and targeted the individual person’s life. Accordingly, health professionals will have a clearer idea of important aspects for person to participate in and what elements of inclusion that may be meaningful to the individual.

Using the broad term "neurological impairment" we cluster persons with different illnesses and diseases. This can be necessary in order to get rigor and enough articles to make a careful analysis. However, we also risk to compare persons with very different disabilities. We hope this scoping review will initiate more research within the neurological field on meaningful life.

The scoping review report will be published in a peer-review journal. The results will be disseminated at rehabilitation conferences in Denmark and internationally. Furthermore, the results will consolidate the work of the West Danish Knowledge Centre on Neuro Rehabilitation and the ongoing development of rehabilitation in Denmark.

Search strategy.

(DOCX)

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24 Nov 2021

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1. Does the manuscript provide a valid rationale for the proposed study, with clearly identified and justified research questions?

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Reviewer #1: Yes

Reviewer #2: Yes

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2. Is the protocol technically sound and planned in a manner that will lead to a meaningful outcome and allow testing the stated hypotheses?

The manuscript should describe the methods in sufficient detail to prevent undisclosed flexibility in the experimental procedure or analysis pipeline, including sufficient outcome-neutral conditions (e.g. necessary controls, absence of floor or ceiling effects) to test the proposed hypotheses and a statistical power analysis where applicable. As there may be aspects of the methodology and analysis which can only be refined once the work is undertaken, authors should outline potential assumptions and explicitly describe what aspects of the proposed analyses, if any, are exploratory.

Reviewer #1: Partly

Reviewer #2: Partly

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3. Is the methodology feasible and described in sufficient detail to allow the work to be replicable?

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Reviewer #1: No

Reviewer #2: No

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Reviewer #1: Yes

Reviewer #2: Yes

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Reviewer #2: Yes

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(Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: Hello,

Thank you for the opportunity to review this interesting work. However, much more detail is required.

- How is neurological conditions being defined? Is this for all age groups?

- How many reviewers will partake on each step of the methodology? How will screening occur.

- Can you better define "grey literature"? Specifically, what methods did you use to explore the grey literature and what inclusion/exclusion you used to initially map out all available "grey literature"?

-Can you better define what you mean by "meaningful life"?

- What scoping review methodology are you following and how is the PRISMA-SCR being adhered to?

-The Keywords are clear but for indexing questions I suggest that the terms should be extracted from MeSH.

-It is necessary to justify the choice of this time limit (or lack thereof)

-It is necessary to justify the inclusion of all study designs (e.g., why are other review papers going to be included and how will they be synthesized)

-Despite being a literature review there is ethical issues associated with this type of research that should be reported- what does this look like in terms of the "the Helsinki II Declaration and Ethical Guidelines for Nursing Research in the Nordic Countries" cited

- What studies will be excluded and why?

-The team present the categorization of the content of the articles from the bibliographic sample (i.e., through Covidence) - please clarify the methodological procedures and how this will be reported. Will results of the studies be included? How will themes be developed? Refer to the PRISMA-SCR item 13: Detail how evidence will be presented which may be in a

narrative format, table, or visual representation, including a map or diagram

- Please justify the use of the CASP in a scoping review (that typically does not assess methodological quality), why was this chosen? Will this apply to all study designs?

Reviewer #2: This scoping review protocol paper highlights the importance of understanding how a meaningful life is perceived by adults with acquired neurological impairments. Indeed, this would be an important review to add to the already existing literature. However, I have several issues with the methods used by the authors that need to be addressed should you want this protocol to be published.

Introduction

1. Line 55 - Spell out acronyms the first time they appear (World Health Organization – WHO).

2. Good rationale for choosing to understand meaningful life in persons with neurological impairments – I would agree that participants thoughts about what they believe are meaningful to their quality of life are not often discussed.

3. The last sentence of the introduction could be more clear/concise. I would consider removing “what is known about the content of the ultimate goal of rehabilitation” since you are focusing on a meaningful life in the context of rehabilitation.

Materials and Methods

1. What scoping review framework are you following for this review? This is a critical piece that is missing from this protocol. There are established frameworks that are widely used and are the gold standards for conducting scoping reviews. (Levac et al., 2010, - https://pubmed.ncbi.nlm.nih.gov/20854677/ and the Joanna Briggs Institute - https://journals.lww.com/ijebh/Fulltext/2015/09000/Guidance_for_conducting_systematic_scoping_reviews.5.aspx).

2. It is a requirement of this journal that the appropriate PRISMA checklist is used for submission of scoping review protocols. Please mention that you are following the PRISMA guidelines and consider following their items for reporting your methods for this review. This will help ensure that your review is transparent and reproducible which is pivotal for this type of work.

3. Eligibility Criteria – this needs to be further fleshed out.

a. Why are you focusing on those >18 years or older? Are you only including individuals who had their injury after that age?

b. How are you conceptualizing meaningful life? What must articles discuss to be considered as “describing a meaningful life”?

c. I am confused about line 89. Are you only including studies if they collected data in person? Does this exclude telephone

surveys or online interviews? Please be more explicit by what you mean by this.

4. Information sources – I am pleased to see that you are including grey literature as this is becoming more standardized for scoping reviews. However, not all grey literature is created equal (i.e., opinion pieces are not generally accepted). Please be more explicit with the grey literature you are choosing to use, how you will be searching for it and what sources you will use to search for the appropriate grey literature.

5. Search Strategy – You say that an initial limited search will be done on 4 databases but the example search strategy you provided is for PubMed. Do you intend to search PubMed as one of your databases? PubMed is generally not recommended for scoping reviews because it is hard to replicate the search results, so I would suggest sticking with the initial databases you mentioned. Furthermore, you need to be more explicit about what databases you are using in your final search.

6. Data extraction process and critical appraisal:

a. Will you be doing a pilot to ensure that the two independent reviewers understand the inclusion criteria? This is

recommended in the frameworks (Levac, JBI) for conducting rigorous scoping reviews. If you are doing a pilot, will the

remaining articles be split or will both reviewers review all the articles for inclusion.

b. I appreciate that you are doing a quality assessment. I would suggest saying that you will be using the appropriate CASP

checklist because there are multiple quality assessment templates that have been put out by them.

7. Data analysis and presentation – the information you have presented here should actually be in the data extraction process. In the analysis section you should describe what techniques you will be using to summarize/collate the data, not what information you will be taking from the articles.

Discussion

1. How could the information you obtain from the review be used by those working in rehabilitation? I think this is a major point missing from the discussion.

**********

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Reviewer #1: No

Reviewer #2: No

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21 Dec 2021

Response to editor and reviewers

Editor:

More details regarding your intended methodology for your scoping review

- details on which scoping review framework

- your inclusion/exclusion criteria

- how adhere to the PRISMA-SCR

Answer:

Joanna Briggs – we have added this

We have elaborated on this.

We have used the checklist in the document with track chances to illustrate how we plan to describe this

More background information on the types of neurological impairments that might be included

Answer:

We have added text in the introduction (line 45-52)

A more nuanced discussion of the impact of these impairments on the person's health and wellbeing

Answer:

We have added text in the introduction and discussion.

Discussion on the larger impact of this review

Answer:

A good and important point – we have added that in the discussion section (line 159-173)

Protocol should be reported in sufficient detail for another researcher to reproduce all experiments and analyses

Answer:

We have described our steps more clearly

Reviewer 1:

- How is neurological conditions being defined? Is this for all age groups?

Answer:

We wish to be open to all neurological conditions. In our search we searched for:

("Nervous System Diseases"[MeSH Terms] OR ("brain injur*"[Text Word] OR "spinal cord trauma*"[Text Word] OR "spinal cord injur*"[Text Word] OR "spinal cord transection*"[Text Word] OR "spinal cord lacer*"[Text Word] OR "traumatic myelopath*"[Text Word] OR "spinal cord contusion*"[Text Word] OR "stroke*"[Text Word] OR "apoplex*"[Text Word] OR "cerebrovascular accident*"[Text Word] OR "brain vascular accident*"[Text Word] OR "multiple sclerosis"[Text Word] OR "disseminated sclerosis"[Text Word] OR "brain laceration*"[Text Word] OR "parkinson*"[Text Word] OR "paralysis agitans"[Text Word] OR "amyotrophic lateral sclerosis"[Text Word] OR "lou gehrig disease*"[Text Word]))

We did limit the search for persons older than 18 years.

- How many reviewers will partake on each step of the methodology? How will screening occur.

Answer:

We have clarified this (line 131-133). We are at least two independent reviewers conducting each step of the scoping review.

- Can you better define "grey literature"? Specifically, what methods did you use to explore the grey literature and what inclusion/exclusion you used to initially map out all available "grey literature"?

Answer:

We have defined grey literature (line 112-113)

-Can you better define what you mean by "meaningful life"?

Answer:

The aim of the study is to describe what a meaningful life is from a patient. perspective. This requires us to stay open to whatever the persons characterise as meaningful. Therefore, we have not made any prior statements or definitions on this topic.

- What scoping review methodology are you following and how is the PRISMA-SCR being adhered to?

Answer:

We follow the Joanna Briggs Institute methodology for scoping reviews and have added PRISMA-SCR.

Throughout the entire document the track changes now provide information on how the PRISMA-SCR is being adhered.

-The Keywords are clear but for indexing questions I suggest that the terms should be extracted from MeSH.

Answer:

We absolutely agree that this is a good idea. Neurology and rehabilitation are MESH terms.

Scoping review is not a MESH term. However, we will keep this keyword as it is more correct than those suggested in the MESH database. The same goes for meaningful life.

-It is necessary to justify the choice of this time limit (or lack thereof)

Answer:

We only present a timeline for the work and we are uncertain about what we need to elaborate on concerning time limit.

-It is necessary to justify the inclusion of all study designs (e.g., why are other review papers going to be included and how will they be synthesized)

Answer:

We include all designs in order to gain the best possible illumination of the topic. Inclusion of reviews are a widely discussed issue. We are aware of the interpretation and will use the reference list for both critical evaluations of the statements and line search.

-Despite being a literature review there is ethical issues associated with this type of research that should be reported- what does this look like in terms of the "the Helsinki II Declaration and Ethical Guidelines for Nursing Research in the Nordic Countries" cited

Answer:

Ethical considerations are described (line 175 – 178)

The fact that we do not include participants directly there are some ethical aspects we donot have to account for. However, according to the Ethical guidelines for Nursing research in Nordic countiries (https://ssn-norden.dk/wp-content/uploads/2020/05/ssns_etiske_retningslinjer_0-003.pdf)

the researcher has a duty to comply with the ethical guidelines laid down in the legislation, conventions or declarations which apply to all researchers. This duty covers all phases of the research process. The researcher should have good knowledge of methods and should possess the competence required by the project, both with regard to subject and to method. This means that the researcher must be qualified for and have experience in applying relevant methods for the collection and processing of data. Researchers who do not have research experience must work under the supervision of researchers with experience. The researcher shall ensure the safe storage of research materials. The researcher shall comply with prevailing national and international rules for authorship. Co-authorship entails that a substantial scientific contribution is made which comprises formulating the project or project-specific methods, or making an analysis and a critical interpretation of data, as well as participating in the formulation or critical examination of the manuscript. Further, it is the duty of the researcher to make all results publicly available and to publish them – including possible negative results.

We adhere to these aspects of the guideline. The same considerations are made about the Helsinki declaration where we adhere to the Scientific Requirements and Research Protocols.

(https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ )

- What studies will be excluded and why

Answer:

We have added this (line 135-136, 140-141).

-The team present the categorization of the content of the articles from the bibliographic sample (i.e., through Covidence) - please clarify the methodological procedures and how this will be reported. Will results of the studies be included? How will themes be developed?

Answer:

We have elaborated the methodological procedures (line 143-149)

Refer to the PRISMA-SCR item 13: Detail how evidence will be presented which may be in a

narrative format, table, or visual representation, including a map or diagram

Answer:

This is added.

- Please justify the use of the CASP in a scoping review (that typically does not assess methodological quality), why was this chosen? Will this apply to all study designs?

Answer:

Thank you for being critical. Included studies are evaluated using a design specific quality assessment template i.e. the CASP checklist for qualitative studies (line 137-139). The quality assessment is needed, as we have no time limit for inclusion and the research question will predominantly be elucidated by qualitative studies where the quality has evolved over decades.

Reviewer 2

Introduction

1. Line 55 - Spell out acronyms the first time they appear (World Health Organization – WHO).

Answer:

We have added this

2. Good rationale for choosing to understand meaningful life in persons with neurological impairments – I would agree that participants thoughts about what they believe are meaningful to their quality of life are not often discussed.

Answer:

Thank you for agreeing on this.

3. The last sentence of the introduction could be more clear/concise. I would consider removing “what is known about the content of the ultimate goal of rehabilitation” since you are focusing on a meaningful life in the context of rehabilitation.

Answer:

We have made the recommended change.

1. What scoping review framework are you following for this review? This is a critical piece that is missing from this protocol. There are established frameworks that are widely used and are the gold standards for conducting scoping reviews. (Levac et al., 2010, - https://pubmed.ncbi.nlm.nih.gov/20854677/ and the Joanna Briggs Institute

Answer:

Joanna Briggs Institute methodology for scoping reviews. We have added this.

Throughout the entire document with track changes we have now provided information on how the PRISMA-SCR is being adhered to.

2. It is a requirement of this journal that the appropriate PRISMA checklist is used for submission of scoping review protocols. Please mention that you are following the PRISMA guidelines and consider following their items for reporting your methods for this review. This will help ensure that your review is transparent and reproducible which is pivotal for this type of work.

Answer:

Thank you for this comment. We have now added this.

3. Eligibility Criteria – this needs to be further fleshed out.

a. Why are you focusing on those >18 years or older? Are you only including individuals who had their injury after that age?

b. How are you conceptualizing meaningful life? What must articles discuss to be considered as “describing a meaningful life”?

c. I am confused about line 89. Are you only including studies if they collected data in person? Does this exclude telephone

surveys or online interviews? Please be more explicit by what you mean by this.

Answer:

In and exclusion criteria has been fleshed out (line 97-113, 124-127)

a) Our aim is to understand the overall aim of individualized rehabilitation "a meaningful life" from a first-hand perspective. Therefore, we include autonomous persons suffering from injuries acquired as adults.

b) The aim of the study is to describe what a meaningful life is from a patient. perspective. This requires us to stay open to whatever the persons characterise as meaningful. Therefore, we have not made any prior statements or definitions on this topic.

Meaningful life must be expressed of the patients or cited in the included articles.

c) Sorry for that confusion. What we mean is that it should be a first-hand perspective. We hope this is clear. We include all methods – including telephone surveys if the questions are open-ended.

4. Information sources – I am pleased to see that you are including grey literature as this is becoming more standardized for scoping reviews. However, not all grey literature is created equal (i.e., opinion pieces are not generally accepted). Please be more explicit with the grey literature you are choosing to use, how you will be searching for it and what sources you will use to search for the appropriate grey literature.

Answer:

Grey literature including reports, expert opinions and editorials are also considered for inclusion in this scoping review (112-113). Initiating search using Google, Google Scholar and the ScoPus database which also contains references to conference proceedings and websites will be used. (not described in article due to word limit)

5. Search Strategy – You say that an initial limited search will be done on 4 databases but the example search strategy you provided is for PubMed. Do you intend to search PubMed as one of your databases? PubMed is generally not recommended for scoping reviews because it is hard to replicate the search results, so I would suggest sticking with the initial databases you mentioned. Furthermore, you need to be more explicit about what databases you are using in your final search.

Answer:

Medline (PubMed) was recommended by the Liberian in order to identify relevant text and keyword to develop the systematic search strategy.

Databases used (line 121-122). The search we have included in the article is just an example and we can include some of our additional searches as well.

6. Data extraction process and critical appraisal:

a. Will you be doing a pilot to ensure that the two independent reviewers understand the inclusion criteria? This is

recommended in the frameworks (Levac, JBI) for conducting rigorous scoping reviews. If you are doing a pilot, will the

remaining articles be split or will both reviewers review all the articles for inclusion.

b. I appreciate that you are doing a quality assessment. I would suggest saying that you will be using the appropriate CASP

checklist because there are multiple quality assessment templates that have been put out by them.

Answer:

(a) We have elaborated the methodological procedures (line 129-141, 143-149)

(b) Thank you – please see line (137-138)

7. Data analysis and presentation – the information you have presented here should actually be in the data extraction process. In the analysis section you should describe what techniques you will be using to summarize/collate the data, not what information you will be taking from the articles.

Answer:

We agree and have elaborated in line 143-149

Discussion

1. How could the information you obtain from the review be used by those working in rehabilitation? I think this is a major point missing from the discussion

Answer:

We agree. Thanks for pointing this out. We have added a paragraph concerning this.

Submitted filename: Rebuttal letter Plos One_December 2021.docx

Click here for additional data file.

16 May 2022

What is a meaningful life for persons with acquired neurological impairments? A scoping review protocol

PONE-D-21-35911R1

Dear Dr. Steensgaard,

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.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

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Kind regards,

Avanti Dey, PhD

Staff Editor

PLOS ONE

Additional Editor Comments (optional):

Thank you for thoroughly addressing the reviewers' comments. Please note that Reviewer #2 has noted a couple minor suggestions which we kindly ask that you address in your final version.

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. Does the manuscript provide a valid rationale for the proposed study, with clearly identified and justified research questions?

The research question outlined is expected to address a valid academic problem or topic and contribute to the base of knowledge in the field.

Reviewer #2: Yes

**********

2. Is the protocol technically sound and planned in a manner that will lead to a meaningful outcome and allow testing the stated hypotheses?

The manuscript should describe the methods in sufficient detail to prevent undisclosed flexibility in the experimental procedure or analysis pipeline, including sufficient outcome-neutral conditions (e.g. necessary controls, absence of floor or ceiling effects) to test the proposed hypotheses and a statistical power analysis where applicable. As there may be aspects of the methodology and analysis which can only be refined once the work is undertaken, authors should outline potential assumptions and explicitly describe what aspects of the proposed analyses, if any, are exploratory.

Reviewer #2: Yes

**********

3. Is the methodology feasible and described in sufficient detail to allow the work to be replicable?

Descriptions of methods and materials in the protocol should be reported in sufficient detail for another researcher to reproduce all experiments and analyses. The protocol should describe the appropriate controls, sample size calculations, and replication needed to ensure that the data are robust and reproducible.

Reviewer #2: Yes

**********

4. Have the authors described where all data underlying the findings will be made available when the study is complete?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception, at the time of publication. The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #2: Yes

**********

5. Is the manuscript presented in an intelligible fashion and written in standard English?

PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.

Reviewer #2: Yes

**********

6. Review Comments to the Author

Please use the space provided to explain your answers to the questions above and, if applicable, provide comments about issues authors must address before this protocol can be accepted for publication. You may also include additional comments for the author, including concerns about research or publication ethics.

You may also provide optional suggestions and comments to authors that they might find helpful in planning their study.

(Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #2: Thank you for addressing my comments. Overall, you have done a great job with my feedback and I am pleased with the responses given and the updates that have been added to the manuscript. I have two minor comments for consideration:

1. Very minor but Medline is not a PubMed database, it is part of OVID. I appreciate that the librarian has recommended Medline and not Pubmed.

2. In your inclusion/exclusion criteria, you don't mention why you're choosing to exclude persons under 18. Furthermore, I would elaborate whether you are including people who received their injury prior to 18 years old and then provide their perspective as adults or whether you only want persons who had their impairment after they turned 18. Perspectives may be different for both groups so important to flesh out.

**********

7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

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Reviewer #2: No

8 Jun 2022

PONE-D-21-35911R1

What is a meaningful life for persons with acquired neurological impairments? A scoping review protocol

Dear Dr. Steensgaard:

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.

If we can help with anything else, please email us at plosone@plos.org.

Thank you for submitting your work to PLOS ONE and supporting open access.

Kind regards,

PLOS ONE Editorial Office Staff

on behalf of

Dr. Avanti Dey

Staff Editor

PLOS ONE