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A look at the mental health of family members with missing loved ones: scoping review
Um olhar sobre a saúde mental de familiares com entes desaparecidos: scoping review

Yzabela Yara de Souza Legramante¹
ylegramante@gmail.com
https://orcid.org/0000-0001-8745-6884
Poliana Silva de Oliveira¹
polianasilvaoliveirat@gmail.com
https://orcid.org/0000-0003-3197-6017
Priscila Norié Araujo-Betetti¹
priscila.araujo@usp.br
https://orcid.org/0000-0003-0259-5880
Felipe Lima dos Santos1,2
felipe.lima.fs@gmail.com
https://orcid.org/0000-0001-5606-9478
Karen da Silva Santos1,3
karen-web@hotmail.com
https://orcid.org/0000-0001-5829-5882
Cinira Magali Fortuna¹
fortuna@eerp.usp.br
https://orcid.org/0000-0003-2808-6806
¹ Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo.
2 Laboratoire École, Mutations, Apprentissages da CY Cergy Paris Université.
3 Laboratoire Éducation et Diversité en Espaces Francophones da Université de Limoges.

Statement of Funding
This research was funded by the Unified Scholarship Program to Support the Training of Undergraduate Students (PUB) of the University of São Paulo\'s Departments of Undergraduate Studies, Research and Innovation, Culture and University Extension and Inclusion and Participation, process number PUB-Pesquisa - 2021/1761, and by the Research Productivity Scholarship of the National Council for Scientific and Technological Development (CNPq) PQ-1D, process number 317384/2021-0.
This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - Brasil (CAPES) – Finance Code 001.

Conflict of Interest Statement
The authors responsible for this study declare that they have no conflict of interest of any kind: personal, commercial, academic, political or financial.

Resumo
O objetivo da pesquisa foi analisar a literatura científica sobre a saúde mental de pessoas que possuem familiares desaparecidos. Estudo do tipo revisão de escopo, seguindo a metodologia do Instituto Joanna Briggs e do PRISMA-ScR. Utilizou-se as bibliotecas virtuais: Biblioteca Virtual em Saúde e National Library of Medicine (PubMed), e as bases de dados: SCOPUS, EMBASE, Web of Science e APA PsycNet. Selecionou-se 10 estudos e apreendeu-se dois eixos temáticos: “Os prejuízos à saúde mental de familiares que possuem entes desaparecidos” e “As estratégias utilizadas e apoio encontrado para o enfrentamento do desaparecimento”. O primeiro eixo discute como o sofrimento emocional e psíquico dos familiares de entes desaparecidos é evidente em todos os estudos apontados, sendo fortemente relacionado a Teoria da Perda Ambígua e a ocorrência de transtornos mentais. O segundo eixo, aponta estratégias para enfrentamento ao fenômeno do desaparecimento como a religião, a presença de laços familiares, a continuidade de projetos migratórios e a organização de programas e intervenções voltados a esse público. A revisão destaca que o sofrimento experienciado pelos familiares de entes desaparecidos pode ser profundo, complexo e diverso com repercussões na saúde mental desses indivíduos.
Palavras-chave: Saúde Mental; Pessoas Desaparecidas; Luto; Saúde Pública; Colaboração Intersetorial.

Abstract
The aim of the research was to analyze the scientific literature on the mental health of people who have missing family members. This was a scoping review study, in accordance with the Joanna Briggs Institute and the PRISMA-ScR. The following digital libraries were used: Virtual Health Library and National Library of Medicine (PubMed), and the databases: SCOPUS, EMBASE, Web of Science and APA PsycNet. 10 studies were selected and two thematic axes: “The damage to the mental health of family members who have missing loved ones” and “The strategies used and support found to cope with the disappearance”. The first axis discusses how the emotional and psychological suffering of family members of missing loved ones is evident in all the studies mentioned, being strongly related to the Ambiguous Loss Theory and the occurrence of mental disorders. The second axis points out strategies to combat the phenomenon of disappearance, such as religion, the presence of family ties, the continuity of migratory projects and the organization of programs and interventions aimed at this public. The review highlights that the suffering experienced by family members of missing loved ones can be profound, complex and diverse, with repercussions on the mental health of these people.
Keywords: Mental Health; Missing Persons; Bereavement; Public Health; Intersectoral Collaboration.

INTRODUCTION
The disappearance of individuals is a common and frequent phenomenon throughout the world1. The circumstances of their disappearance may be understood as a “set of objective and/or subjective factors related to the moment of disappearance, and/or to the reasons why the relatives of the missing persons are unable to discover their fate and whereabouts”1 (p. 7).
Disappearance is a multi-causal process which involves three motivations for the continuous non-appearance of the individual: 1) when the disappearance occurs due to personal reasons, in other words a “voluntary” disappearance, for example, in a situation where the person runs away from home; 2) when the disappearance is “involuntary”, in other words, against their will, for example, in cases of kidnapping or disappearance due to a natural disaster; and 3) when the individual is unaware of their condition as a missing person, for example, in situations of psychological immaturity, lack of information or problems related to mental health and significant intellectual disabilities2.
In this respect, thousands of people disappear every day of every year, victims of the disappearance phenomenon. In Australia, around 53,000 people go missing every year3, while in countries such as Great Britain and the United States, the figure is approximately 155,0004 and 521,0005 respectively. In Brazil, it is estimated that this number is around 65,000, according to data released by the Brazilian Public Security Yearbook in 20216.
Although a significant percentage of individuals return home or are located within a week or so - around 86% of missing persons in Australia according to Bricknell7 and around 50% in Brazil according to sources in the Brazilian Public Security Yearbook8 - the number of people who are likely to remain missing for long periods of more than six months is significant9.
Law 13.812/2019 established the National Policy for the Search for Missing Persons, which creates the National Register of Missing Persons in Brazil and defines the concept of missing person as any human being whose whereabouts are unknown, regardless of the cause of their disappearance10, even though for legal purposes this law only covers individuals under the age of 18.
Studies11,12 show that disappearance, regardless of the circumstances, not only affects the individual who experiences this phenomenon, but also influences the lives of family and friends, since the impact on those left “behind” can be profound and painful. With the disappearance, families and friends dedicate time, energy and resources to the search for the missing person, and this process results in the suspension of private life and essential elements for the process of mourning, thus resulting in situations of risk, stress and damage to the physical and mental health of these family members11.
According to Canguilhem13 (p. 64), health can be defined as “the possibility of tolerating infractions of the usual norm and of instituting new norms in new situations”, in other words, the possibility of facing new situations and the tolerance or self-assurance inherent to each individual in order to face and overcome the adversities of the environment. Understanding the aspects that surround the mental health of family members who have missing loved ones can help develop a welcoming and empathetic attitude towards those who suffer this phenomenon, thereby helping them in their search for tolerance and resilience.
Consequently, understanding how the disappearance of an individual can affect the mental health of their family members is crucial if the care provided by health professionals is to be humanized and comprehensive, providing a welcoming approach to the singularities that each person\'s mental health presents after experiencing “being left behind”.
In the light of the above, and given the lack of review studies dealing with the mental health of family members of missing persons, the aim of this study is to analyze the mental health of persons with missing family members based on scientific literature.

METHODS
Type of Study
This is a scoping review that follows the recommendations of the Joanna Briggs Institute14 and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR)15. The review protocol has been registered on the Open Science Framework platform16. The registration is as follows: https://doi.org/10.17605/OSF.IO/NAQ9M.
A scoping review was chosen because it is a type of study that meets various objectives, such as: examining the extent (size), range (variety) and nature (characteristics) of the evidence on a particular topic or issue; determining the need to carry out a systematic review, with a view to future studies on the subject; summarizing findings from a body of knowledge; or identifying gaps in the literature in order to cooperate in the planning and execution of future research14.

Methodological Procedure
For the preparation of the study, the recommendations published in the Joanna Briggs Institute Review Manual14 were used, which establishes the following steps to be followed: (1) define the objective and issue of the research; (2) establish the inclusion and exclusion criteria; (3) determine the strategy for searching and extracting data; (4) search, select and analyze the evidence; (5) summarize and submit the results.

Research question and eligibility criteria
To formulate the question of research, the mnemonic PCC (Population, Concept and Context) was used, in which P was defined as family members with missing loved ones, C as Mental Health and C as the disappearance of individuals, resulting in the study\'s guiding question: What has been published in scientific literature on the mental health of family members with missing loved ones?
The criteria for inclusion were defined on the basis of a prior search for primary and secondary studies and documents on the subject, which included studies available in full, regardless of language, in the following virtual libraries: Virtual Health Library (BVS) and National Library of Medicine (PubMed), and in the databases SCOPUS, Web of Science, EMBASE (Elsevier), APA PsycNet; no time limit was set. The exclusion criteria were duplicate studies, those not available in full and those which did not meet the research question set for this review.

Search Strategy and Extraction of Data
In order to determine the search strategy, controlled descriptors were chosen from the Medical Subject Headings (MeSH)17 and the Descriptors in Health Sciences (DeCS)17 suitable for the databases mentioned, and keywords were also adopted in order to broaden the search and exhaust the search possibilities.
Different search strategies were used in order to adapt the search to the databases used. Table 1 shows the strategies developed using descriptors, keywords and Boolean operators AND and OR; it presents the number of studies found and selected according to the research question. The searches were carried out in July, August and September 2022. Data were extracted by reading the selected studies in their entirety.
Table 1 – Search strategies used in the data bases and virtual libraries
Source: prepared by the authors

Selection and analysis of the evidence
The online app Rayyan Qatar Computing Research Institute - Rayyan QCRI18 was used to organize and select the studies.
The selection of articles was carried out independently by two researchers, and any doubts or difficulties in relation to the research findings were discussed with a third researcher in order to reach a consensus on the decisions regarding the studies.
The selection process took place in three stages. Initially, duplicate articles were excluded. Subsequently, the titles and abstracts found in the databases were read in order to select those that answered the study\'s guiding question. Once this selection had been made, articles with titles and abstracts that were incompatible with the objective of the research were excluded, and those that provided preliminary answers to the research question were maintained. In the third selection stage, the previously selected articles were read in full in order to confirm that they answered the overriding research question.
A total of 820 studies were identified during the initial search process. From the first analysis, 343 studies were excluded due to duplication, resulting in 477 studies which were read for title and abstract. Subsequently, two researchers independently selected the articles based on the guiding question, the criteria for inclusion and exclusion and the full text of the papers. This resulted in 10 studies that answered the research question (Figure 1).
Figure 1 - Systematization of the stages and results of the studies included in the scoping review
Source: prepared by the authors following recommendations of PRISMA-ScR, 2020.

In the process of analyzing the evidence, information was extracted using the items proposed by the Joanna Briggs Institute16 and presented in summarized form in a table including references, year of publication, language, country, type of study, population, objective, principal results and conclusions.
After identifying and summarizing the main results, an analysis was carried out based on the study\'s overriding question and in the light of current scientific literature. During this stage, tables were drawn up to systematize the main themes and the contributions of each article, as well as online meetings with three researchers to discuss the points of convergence and divergence between the contents of the chosen articles. Two thematic axes emerged from the analysis, highlighting the damage to mental health and strategies to support family members in the face of the phenomenon of disappearance.

RESULTS
The 10 studies identified were published between 2012 and 2021, in English, Spanish, Portuguese and German, in the following countries: Germany (n=1), Australia (n=1), Brazil (n=1), Italy (n=1), the Netherlands (n=3), Peru (n=1) and Switzerland (n=2). With regard to the type of study, 4 were characterized as quantitative research (1 regression analysis, 1 mediation analysis, 1 retrospective cohort and 1 descriptive analysis); 2 as qualitative research (1 multiple case study and 1 case study); 1 technical document; 1 literature review; 1 documentary study; and 1 pilot study. The contexts studied were diverse, including: General Disappearance; Disappearance in a Migration Setting; Armed Conflict; Context of Violence; Civil War; and Enforced Disappearance. The characteristics of the studies, as well as the main results, are shown in Table 2.
Table 2- Characterization of the articles included in the scoping review
Source: prepared by the authors

DISCUSSION
The analysis of the studies chosen revealed two thematic axes: The damage to the mental health of family members who have missing loved ones; and The strategies used and support encountered in coping with the disappearance.

The damage to the mental health of family members who have missing loved ones
Studies show that the disappearance of a loved one can occur in various contexts, including: disappearance in the context of a war, armed conflict19, violence20, migration21 and in times of peace or absence of conflict (disappearance in general). Studies point to the occurrence of mental suffering in relatives of missing persons, regardless of the context in which the disappearance occurred.
The mental suffering experienced in most studies is related to Ambiguous Loss20, 22, 23, 24, 25, 21. The theory of Ambiguous Loss was proposed by Pauline Boss and is defined as “a situation of uncertain loss, resulting from not knowing whether a loved one is alive or dead, absent or present”26. Thus, ambiguous loss is the most stressful type of loss, since it defies resolution, that is, its resolution is a challenge, because unlike death, there is no official verification of the loss, and thus no rituals to support mourning27. Experiencing ambiguous loss can create confusing perceptions about family roles and who is or is not part of the family nucleus26.
Ambiguous loss is related to two basic problems. The first refers to the structural problem that can result from the loss of a loved one, leading to ambiguity of limits, lack of definition of the family roles involved, as well as decisions and continuity of daily tasks. The second refers to a psychological issue, when there are feelings of despair and ambivalence, which lead to feelings of guilt, immobility, passivity, anxiety and depression26. Thus, ambiguous loss is not just an individual factor, but a collective disorder, since the nature of the relationship between the missing person and the persons “left behind” is compromised28.
There are two situations of ambiguous loss: one in which the individual is physically present but psychologically absent, and the other in which the loved one is physically absent but psychologically present, since their status as dead or alive is unknown26. The disappearance of individuals falls under the second type mentioned.
From this perspective, the mental suffering of family members with missing loved ones stems from the lack of knowledge and uncertainty, which causes the feeling of not knowing what to do and what to think. In parallel to this process, the absence of proof of death makes it impossible to carry out rites of passage to deal with the loss and assign meanings, which are important factors in the mourning process29. The family\'s dynamic and gradual development become frozen, resulting in the denial of the loss and the maintenance of hope.
Ignorance of the facts and uncertainty can produce traumas, events that are not symbolized, and the expectation of the reappearance of the missing person can sometimes become “obsessive”, painful, looming over the life of the family members, in a phenomenon called “ultra-present remembrance” 30,19.
The “ultra-present remembrance” is a memory of repetition caused by uncertainty, a memory made up of anxiety about what the loved one might be suffering, a collective and constant remembrance of the disappearance and the hope of a possible return30. These factors, as pointed out in the study by Patiño and Lamego19, make the mourning process impossible.
According to this logic, mourning is not only linked to death; its process is related to the possibly permanent separation from someone or something of great emotional importance31. The process of mourning is important for the individual and for society, and its development is often due to the search for the truth, clarification, the feeling that justice has been done, and the attribution of meaning to the loss32.
Thus, the feelings and process of “poorly resolved grief” are related to the concept of “ambiguous loss”, referring to the impediment of the mourning process due to the impossibility of clarity and resolution of the loss26. This leads to prolonged grief disorder, which has been mentioned in different studies that make up this scoping review20, 23, 33, 34, 25, 32, 24.
Prolonged grief disorder is defined as a disorder in which, after experiencing the loss of a loved one, there is a generalized and persistent grief response, which is accompanied by longing for the individual, constant worry, intense emotional pain based on sadness, guilt, anger, inability to experience a positive mood, as well as difficulty in getting involved and carrying out social and daily activities. This disorder has a mourning response over an unusually long period (more than 6 months), so the situation can lead to significant impairment in the personal, family, social, educational and occupational functioning of the relative of the missing loved one35.
The studies by Patiño et al.19 and Mazzarelli et al.21 emphasize the negative impact that the disappearance has on the family members or friends of people who have disappeared due to violence, with greater severity in the presence of depressive symptoms and prolonged grief when compared to persons bereaved or with losses confirmed.
Another factor identified in persons with missing loved ones was the occurrence and quality of counterfactual thoughts, which are generally spontaneous and recurrent thoughts of alternative possibilities for events that have already occurred36. The study by Kennedy et al.25 identified a strong relationship between counterfactual thoughts and the occurrence of symptoms of prolonged grief disorder, post-traumatic stress disorder and psychological distress.
Counterfactual thought has upward aspects (thinking of more positive possibilities for the event that occurred) and downward aspects (thinking of less positive possibilities for such event). Kennedy et al.25 also found that downward counterfactuals were not associated with psychological distress or prolonged grief reactions, but were positively related to positive psychological changes after an adverse event.
In addition to the perspectives mentioned above, studies22,19,24 cite the influence of the economic and social scenario and its relationship with mental suffering, since financial insecurity, as well as the lack of legal, administrative, psychological and psychosocial support and the recognition of justice are conditions that increase the emotional suffering of family members.
Physical symptoms such as headaches, physical pain and insomnia have also been identified, especially in situations of violence, such as kidnappings, wars and migratory contexts19,21. Emotional/psychic pain also causes pain and organic changes, the basic triggering event being the disappearance of a loved one.
The study by Comtesse et al.37 developed the “Ambiguous Loss Inventory Plus”, an inventory to assess specific psychological reactions to ambiguous loss in persons with missing loved ones. The instrument can help identify the various exacerbated psychological reactions that can trigger mental suffering, as pointed out in the studies included in this review.
The violence experienced by families who are victims of enforced disappearance (a type of disappearance related to the deprivation of a person\'s liberty caused by the actions of members or agents of a state38,32) is associated with alcoholism and chronic anxiety³⁹, silence, anger, despair, exhaustion, suicidal thoughts and changes in appetite, as well as feelings of impunity32 and a sense of lack of protection, loss of rights and extreme vulnerability to the state perpetrating the disappearance19.
Although different studies have contributed to an understanding of the various impacts on the mental health and lives of the families of missing persons in situations of violence such as armed conflicts and civil war, for example, there is a lack of studies, especially in Brazil, that examine the mental health implications of the families of missing persons in a context of urban violence.
Urban violence, linked for example to organized crime, drug trafficking, the actions of militias and often perpetrated by the police themselves, is frequent in Brazil\'s urban centers and peripheries, affecting to a greater extent populations with unfavorable socio-economic conditions, who are vulnerable, especially the black population39. This context is related to precarious public services (from health to public security), segregation, structural racism, human rights violations and the subversion of human dignity40. As the Brazilian state has a specific policy for searching for missing persons, there is a need for studies that can address the impacts of missing persons in the context of urban violence, as well as the care of their families.

The strategies used and support encountered in coping with the disappearance.
The studies analyzed showed possibilities for dealing with the mental suffering caused by the disappearance of a loved one.
In this respect, the study by Mazarelli et al.21 indicated that resilience factors of the participants, such as religion, searching for the missing person, the presence of family ties and the continuation of the migratory project in search of better living conditions, helped them to confront the suffering they felt.
Attention should also be paid to protective factors, which can influence the mourning process and the mental health of the individuals. Thus, one protective factor that has been studied is self-compassion, which can be defined as a set of attitudes that promote a person\'s openness to the suffering experienced, recognizing it as inherent to the human experience. Self-compassion avoids harsh self-criticism and allows the development of feelings of kindness and self-respect41,23.
The study by Lenferink et al.23 sought to relate the association between self-compassion and levels of prolonged bereavement, depression and post-traumatic stress disorder among people confronted with the disappearance of a loved one. In a correlational study, Lenferink et al.23 identified a significant and negative association between self-compassion and the occurrence of depression, post-traumatic stress disorder and prolonged bereavement. The results of the study suggest that people with more self-compassionate attitudes are less likely to suffer from ruminating thoughts related to the disappearance of their loved one, thereby mitigating the occurrence of psychopathologies such as depression and post-traumatic stress disorder.
Studies were also identified that dealt with the organization of interventions and programs aimed at assisting families with missing loved ones24,38.
The study by Andersen et al.24 presented a program developed by the International Committee of the Red Cross in Sri Lanka to assist relatives of missing persons, through legal, administrative and psychosocial follow-up, with the aim of supporting and strengthening these relatives in getting their lives back on track.
The interventions carried out included: 1) individual home visits and referrals to support network services; 2) eight support group sessions aimed at conceptualizing, identifying and reconstructing the family system, reflecting on the concept of ambiguous loss, expected reactions and mechanisms for coping based on the social and cultural context of each family; and 3) actions to involve and support the local community24.
The study by Andersen et al.24 identified a significant reduction in levels of anxiety, depression, somatic symptoms, and improved functionality among family members of missing persons who took part in the program\'s activities, and linked this to the fact that the program was organized around peer group activities, i.e. the participation of people from local communities, family members who had already been assisted in the program, which allowed for greater bonding, empathy, identification and acceptance of the family members who were being supported, thereby breaking their social isolation.
The experiences reported by Andersen et al.24 highlight the involvement of individuals and communities in the development of more active and collective care activities, emphasizing the importance of the collective experience of mourning. This perspective corroborates the reflection made by Rente and Merhy42 on the difficulties of our contemporary society in dealing with mourning, devaluing rituals, processes of passage, and how the context of the COVID-19 Pandemic has manifested the need to value the collective character of the experience of mourning and the processes for its elaboration, factors also highlighted in another study29,43.
In Peru, the Ministry of Health, in view of the period of violence experienced between 1980 and 2000, which caused significant psychosocial impact on the lives of the Peruvian population, launched a technical document in 2012 with the aim of providing methodological tools to health professionals for individual, community and social support for relatives of missing persons in the context of armed violence38. Despite mentioning that the aim was to provide methodological tools, an analysis of the document provides guidelines for the development of a specific program aimed at assisting relatives of missing persons, to be developed in health clinics and centers and with staff trained and qualified in psychosocial care, also identifying cases of people who need more specific mental health care.
Furthermore, the study by Hofmeister et al.22 indicates the contribution of forensic action (“recognition of bodies”) to dealing with the adversities experienced by the relatives of missing persons. In this way, the focus of forensic action is on the missing individual and their family members; the actions are therefore used in order to make possible: (1) maintenance of the human dignity of the missing individual, thus enabling their recognition and conclusion; and (2) alleviation of the suffering of relatives, making possible the experience of mourning and the closure of cycles.
In view of the above, there are various strategies that can be used by the family to support and cope with the disappearance of a loved one. The importance of these actions is focused on building possibilities for family members to find ways to return to their daily and social activities, i.e. to focus their attention and experience on their present life and self-esteem. These strategies are aimed at understanding the phenomenon of the disappearance in the lives of family members and seeking to re-establish the roles played in the nucleus of the family.

LIMITATIONS
A limitation of this study was the impossibility of accessing certain studies in their entirety, due to the unavailability of free access in some of the databases used, which could have provided information relevant to the topic in question.

CONCLUSIONS
This scoping review has made it possible to understand that the suffering experienced by relatives of missing loved ones can be profound, complex, diverse and have repercussions on their mental health. From this perspective, it is important to recognize the mental health needs of this group of people, as well as to employ strategies that make it possible to deal with these problems, in addition to circumstances that provide access to and continuation of these actions. Future research is needed to understand the trajectory of these family members in the health network and the role of nursing in helping these people.

RELEVANCE FOR CLINICAL PRACTICE
This review contributes to knowledge regarding the impact that the phenomenon of disappearance can have on the mental health of persons with missing loved ones, as well as addressing care strategies and experiences carried out in different countries. The knowledge produced can help health professionals, as well as public health and social policy makers, to organize programs to provide care for people who experience the phenomenon of disappearance.

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