Family bereavement care interventions during the COVID-19 pandemic: a scoping review protocol.

INTRODUCTION: The COVID-19 pandemic has caused significant disruptions to daily social routines and to the lived experience of bereaved families. This article outlines the protocol for a scoping review of published studies to evaluate psychosocial and psychotherapeutic interventions intended to help family carers adjust to grief, loss and bereavement due to COVID-19. This review addresses one broad research question: 'What do we know about bereavement support interventions for family carers of COVID-19 victims?' METHODS AND ANALYSIS: The seminal framework by Arksey and O'Malley will guide the review process, which will cover both the qualitative and quantitative scientific literature on grief support during COVID-19. We will search for relevant studies in several databases, namely PubMed, Web of Science, CINAHL Complete, PsycINFO, Scopus and Directory of Open Access Journals. Moreover, we will search the reference lists of included studies and grey literature sources. The database search will be limited to studies from February 2020 (first death by COVID-19) to 1 January 2022. Only literature written in English, Portuguese and Spanish shall be included. Two independent reviewers will screen the literature, select articles and extract data, in an iterative process. Any disagreements will be solved through consensus-based discussion. Results will be reported with descriptive statistics, accompanied by a thematic analysis. ETHICS AND DISSEMINATION: The study will use information acquired from previously published papers and hence does not require ethical approval. This protocol is registered with the Open Science Framework (https://osf.io/bw7fn/). Scoping results will be disseminated via posters and oral presentations to both academic and clinical audiences, as well as through peer-reviewed journals. © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

This scoping review will systematically search and map psychosocial and psychotherapeutic support for bereaved family carers by COVID-19.

The comprehensive overview will collect evidence from both quantitative and qualitative data, as well as the grey literature on grief support during the COVID-19 pandemic.

Considering the scarcity of the research in this field, this review will use an exhaustive search strategy guided by experienced researchers.

Only studies in English, Portuguese and Spanish will be included.

Introduction

COVID-19 is one of the century’s most lethal and widespread viral outbreaks, with over 433 million confirmed cases and 5.9 million deaths worldwide.1 The physical/social distancing norms adopted in several countries have caused disparities in daily social functioning as well as in the lived experience of bereaved families due to COVID-19.2 The death of a loved one has a profound impact on mental health, challenging the individual, and triggering adaptations and internal transformations.3 The loss of someone significant can influence family dynamics and require readjustments to new life circumstances.4 Healthy family functioning, including communication and expression of feelings, can facilitate adjustment to loss. Grief is a multidimensional normative process following loss that involves the adaptation of various human dimensions, such as: affective, cognitive, behavioural and spiritual.5 6

Worden7 defines a task-based Model of Grief the bereaved person must perform to adjust. The four tasks are: ‘(a) accept the reality of the loss, (b) process the pain of grief, (c) adjust to a world without the deceased, and (d) help the survivors find an appropriate place for the deceased in their emotional life’ (p5736).8 Tasks occur in no particular order, although there is a natural order, since completing some tasks presupposes completion of others. However, people may need to revisit certain tasks over time. Therefore, grief is not linear and there is no clear timeline for completing the grief tasks.7 While most bereaved people tend to adjust to loss over time, there is still a significant minority that reports continual high levels of distress, as well as grief symptoms that are abnormally persistent and pervasive over time following the loss.8 9 Certain individuals suffer a variety of post-loss negative outcomes—including bereavement-related depression, anxiety and post-traumatic stress—while others are affected by loss-specific symptoms that are not suitably encompassed by these recognised medical conditions.10

In these uncertain times, people who suffered a shocking and unexpected death of a relative or friend lacked a period of anticipatory grief (normal mourning process before death), and experienced disrupted farewell ritual and rites of passage.2 11 These death-related rituals legitimise grief, acknowledge the deceased person, encourage family connection, reconstruct new bonds and favour requests for forgiveness.4 12 Proper rituals promote quality of dying experience for victims and loss integration for bereaved family members.4 13 Typically, COVID-19 deaths are premature and sudden, which may lead surviving family members to maladaptive coping styles and difficulties in adaptation to a new normal.2 14

Currently, the efforts of health professionals have progressively focused on the biopsychosocial and spiritual morbidity and suffering associated with bereavement. In this sense, the available evidence indicates that psychological interventions have some positive effects on mental health status and grief outcomes.15 Understanding existing psychosocial and psychotherapeutic bereavement-support strategies is necessary for providing effective care for bereaved families.16 Support groups, family counselling, self-care training or self-management programmes, educational workshops and telehealth services are all examples of psychosocial strategies that provide psychological and social support.15 17 18 In addition, psychotherapeutic interventions based on cognitive–behavioural components are often practised with the bereaved because they decrease the probability of future psychological or medical problems.19

We will perform a scoping review of the scientific literature to understand the extent to which psychosocial and psychotherapeutic support for bereaved family carers by COVID-19 are offered in health and social care facilities and community settings. To the best of our knowledge, universal bereavement care provided by healthcare institutions is still scarce.3 From a public health standpoint, the COVID-19 pandemic has accentuated this gap and the urgent need that institutions help bereaved families.3 This review will offer recommendations that healthcare professionals can adopt to relieve complicated bereavement reactions of families in the aftermath of this emergency.

Methods and analysis

Scoping reviews are useful to systematically search and map the body of literature when detailed issues in the fields of study are still unclear. They also help identify gaps in the research and report available knowledge, informing a practice area or topic.20 Therefore, a scoping project can assist bereavement interventions and prevent complicated grief during the COVID-19 pandemic.

This scoping review will use Arksey and O’Malley’s framework,21 refined by Levac et al22 and the Joanna Briggs Institute (JBI),23 which identifies five scoping methodological steps: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating and summarising the results. The protocol was based on Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P)24 and PRISMA Extension for Scoping Reviews.25

The draft protocol was reviewed by the members of the research team and modified as required. The research team has experience/expertise in bereavement care (CL and AQ) and knowledge synthesis methods (DM, SM, LC, AJ, MAS and RC).

Stage 1: identifying the research question(s)

Given the exploratory nature of the scoping review, and its focus on summarising the available evidence, one broad research question was developed: ‘What do we know about bereavement support interventions for family carers of COVID-19 victims?’

This review will also seek to answer the subquestions: ‘What types of interventions to reduce bereavement and complicated grief during the COVID-19 pandemic are addressed in the existing literature?’; ‘In what settings are these interventions provided?’; ‘Which assessment tools are used to assess family bereavement/grief?’; ‘What factors constrain and facilitate effective implementation of these interventions?’; ‘Are there specific components of intervention design (frequency, single or bundled interventions, individual or group application, dose, duration, intervention delivery) that subsequently influence outcomes during bereavement?’; ‘Are these interventions effective?’

Stage 2: identifying relevant studies

A systematic literature search will be carried out to identify relevant evidence from the following research databases: PubMed, CINAHL Complete, PsycINFO, Scopus, Web of Science and Directory of Open Access Journals. Relevant grey literature, preprints and research protocol registries will be retrieved from supplemental online resources (eg, Researchgate.net, MedRxiv, ClinicalTrials.gov, Google Scholar and ProQuest Dissertations and Theses). We will also review the reference lists of included studies, searching for studies that might have been missed.

Database search strategies will be developed using Medical Subject Headings (MeSH) terms (or synonyms) related to the target population, phenomenon of interest and contextual factors. Terms will be searched in the title, abstract and subject headings fields, as suitable. The search strategy (table 1) will be fitted to each database.

Table 1

Potential keywords for input in each database

Key concepts	Title-abs-key	Search terms
	Family grief/ bereavement/mourning	OR	“family grief*”, “grieve”, “grieving”, “bereave”, “mourn”, “mourning”, “caregiving grief”, “widow*”
AND	psychosocial/ psychotherapeutic interventions	OR	“psychosocial Intervention”, “person-centered psychotherapy”, “psychotherapy”, “psychotherapeutic processes”, “crisis intervention”, “narrative therapy”, “music therapy”, “logotherapy”, “interpersonal psychotherapy”, “imagery”, “psychotherapy”, “emotion-focused therapy”, “dance therapy”, “color therapy”, “bibliotherapy”, “behavior therapy”, “art therapy, “animal assisted therapy”, “therapeutic alliance”, “counselling”, “support group”, “social support” “self-care”, “self-management interventions”, “educational programs”, “workshops”, “telehealth”, “on-line support”, “e-health”, “m-health”
AND	pandemic/epidemic/ by COVID-19	OR	“COVID-19”, “Corona*”, “2019-nCoV”, “SARS-CoV-2” “pandemic*”, “epidemic*”, “COVID-19 Pandemic”

The search strategy will not be restricted by study design or type of article and all relevant health-related disciplines (ie, nursing, psychology and psychiatry) will be included, since articles will likely originate from various disciplines. In addition, all study designs will be eligible for inclusion: experimental and quasi-experimental; observational; qualitative; mixed-method; systematic reviews; scoping reviews; overview papers and narrative reviews.

The database search will be limited to studies from February 2020 (first death by COVID-19) to 1 January 2022. This constraint will ensure that the literature reviewed only includes studies developed during the current pandemic context. Given the reviewers’ linguistic skills, the only studies included will be those published in English, Portuguese and Spanish.

Articles will be screened using a reference management tool (ie, Mendeley) to determine which search results will be downloaded. Duplicates will be eliminated. The bibliographies of selected articles will be screened to identify potentially eligible studies. A manual search of key journals will enable the identification of any articles missed in the database and bibliography searches. During the search, additional keywords and sources may be detected and included in the strategy.

Stage 3: study selection

To minimise bias, two independent reviewers (DM and AJ) will screen potentially eligible studies. After screening of titles and abstracts (level 1 screening), the full text of studies will be evaluated in detail by the reviewers based on the established inclusion criteria (level 2 screening). Potential disputes will be settled through discussion and, if required, by a third reviewer with expertise in the research area. Rationale for rejecting full-text studies will be stated. The reliability of individual studies may vary depending on characteristics such as sample size or measures used, but the methodological quality will not be a basis for study exclusion, as long as inclusion criteria are fulfilled. This procedure is consistent with the gold-standard guidelines for scoping reviews.21–23

Eligibility criteria

The review will include studies with diverse methodologies and designs. Studies must meet the following inclusion criteria: (1) include bereaved family carers (≥18 years old) of people who died from COVID-19; (2) report data from a psychosocial or psychotherapeutic intervention; (3) published from February 2020 to the beginning of review; and (4) text or publication in English, Portuguese and Spanish.

The review will cover studies that: include family carers of patients in any age group (including partners, relatives, friends or neighbours who provide unpaid care or support26); evaluate psychosocial or psychotherapeutic interventions intended to help family carers adjust to grief, loss and bereavement due to COVID-19; and report a grief outcome in family carers.

Publications that report an intervention’s effectiveness in reducing grief will be included if outcomes are related to anticipatory or complicated grief. In contrast, the review will exclude studies that report on the effectiveness of medications or other medical interventions; and studies that report interventions aimed at healthcare workers dealing with grief (eg, general practitioner, nurse) rather than the bereaved person.

When a study assesses both family carers and other caregivers, only the data and/or findings specific to the family carers will be included in the review and synthesis. During the screening process, these papers will be identified by reviewers, and any reviewer disagreements will be resolved through consensus-based discussion.

Stage 4: charting the data

The following information will be extracted from each included article: general bibliographical information, type of study and objectives, methodology and intervention design, characteristics of study participants, types of interventions to support family bereavement/grief, types of outcomes assessed as well as any other significant findings. The data extraction form from the JBI manual23 will be adapted and applied. Two researchers (DM and AJ) will independently extract data and use the same data extraction tool to ensure consistency.27 If an article lacks information relative to the intervention, outcomes or results, this will be recorded during data extraction.

Stage 5: collating and summarising the results

The findings will offer a comprehensive view of the research topic, but will not assess the quality of individual studies nor their risk of bias. This option is in line with Arksey and O’Malley’s framework,21 as well as with the lasted methodological guidelines for the conduct of scoping reviews.23 25 27

Based on Tricco et al,25 data analysis will be presented using two types of evidence: (1) a descriptive numerical summary and (2) a thematic analysis. Results will be summarised in a table, followed by a narrative report outlining the main findings and explaining their bearing on the review’s purpose and research questions. Coding software may be used to facilitate this process, depending on the volume of data. Finally, knowledge gaps and future areas for primary research or for a systematic review will be identified.

Study status

A draft of the scoping review is in progress and a final report will be achieved before the end of April 2022.

Patient and public involvement

Patients or the public are not involved in the design of this scoping review study.

Ethics and dissemination

The study will use information acquired from previously published papers and hence does not require ethical approval. It was registered in August 2021 on the Open Science Framework (registration number: https://osf.io/bw7fn/).

With this protocol, we intend to guarantee the rigour, transparency and quality of a systematic process. For example, a triangulation of researchers will identify and select the studies, and research in different databases. The PRISMA checklist will be used to support methodological transparency and dissemination of the findings.24 25

Scoping results will be summarised in both a descriptive and thematic format and presented via posters and oral presentations to both academic and clinical audiences, as well as through peer-reviewed journals.

Discussion will include the implications of the findings for the clinical practice of healthcare providers and for healthcare planning by healthcare managers. Lastly, the findings of this scoping review will inform the development of targeted and systematic review questions20 that may be used in guidelines for evidence-based practice, as well as in recommendations for effective bereavement care interventions and bereavement services during a pandemic.