|
| |
 |
|
| ARTICLE |
|
| Year : 2020 | Volume
: 18
| Issue : 2 | Page : 139-149 |
|
Relatives of Enforced Disappeared Persons in Mexico: Identifying Mental Health and Psychosocial Support Needs and Exploring Barriers to Care
Geert E Smid1, Margriet Blaauw2, Lonneke I.M Lenferink3
1 ARQ National Psychotrauma Centre, Diemen, The Netherlands, and University of Humanistic Studies, Utrecht, The Netherlands
2 Independent Consultant Mental Health and Psychosocial Support, The Netherlands
3 Department of Clinical Psychology and Experimental Psychopathology, Faculty of Behavioral and Social Sciences, University of Groningen, Groningen, Department of Clinical Psychology, Faculty of Social Sciences, Utrecht University, Utrecht, The Netherlands
| Date of Submission | 02-Nov-2019 |
| Date of Decision | 16-Jun-2020 |
| Date of Acceptance | 04-Sep-2020 |
| Date of Web Publication | 30-Nov-2020 |
Correspondence Address:
Geert E Smid
Nienoord 5, 1112 XE Diemen
The Netherlands
 Source of Support: None, Conflict of Interest: None
DOI: 10.4103/INTV.INTV_55_19
In the current study, we explored the needs for psychosocial support as well as barriers to care among relatives of enforced disappeared persons in Mexico. Interviews were conducted with 29 relatives of disappeared persons as well as with representatives from seven organisations working with relatives. Needs and barriers to care mentioned by the interviewees were categorised and rated according to the frequency of mentioning. The interviewers, a psychiatrist and a medical doctor, assessed emotional distress. All interviewed relatives reported and showed signs of severe emotional distress. Frequently reported mental health symptoms included suicidal thinking, sleeplessness, anxiety, changes in appetite, intrusive memories, irritability and major role impairments. The most frequently expressed needs for psychosocial support included peer support, support when in contact with law enforcement officers, treatment of mental health conditions, religious support and family support. The most frequently encountered barriers included having a negative opinion about the quality of available services, feelings of judgement from other people (e.g., due to incrimination), lack of available services and not knowing where to get help. These findings emphasise the need to provide practical and informational support to relatives of disappeared persons as well as to provide emotional support during the entire search process for their missing relative, and beyond.
Key implications for practice
- There is an urgent need to provide practical and informational support to relatives of disappeared persons as well as to provide emotional and family support during the entire process of searching for the missing relative, including during contact with the law, searching, reconnection, and/or before, during and after exhumations and handing over of the remains.
- Psychosocial support providers should focus on living with uncertainty and refrain from pressure for closure as well as from imposing hope as a moral imperative.
- Mental health care professionals need to provide adequate treatment for common mental health conditions, including depression and posttraumatic stress disorder, within a supportive context.
Keywords: ambiguous loss, enforced disappearance, mental health and psychosocial support, missing persons, prolonged grief reactions
How to cite this article:
Smid GE, Blaauw M, Lenferink LI. Relatives of Enforced Disappeared Persons in Mexico: Identifying Mental Health and Psychosocial Support Needs and Exploring Barriers to Care. Intervention 2020;18:139-49 |
How to cite this URL:
Smid GE, Blaauw M, Lenferink LI. Relatives of Enforced Disappeared Persons in Mexico: Identifying Mental Health and Psychosocial Support Needs and Exploring Barriers to Care. Intervention [serial online] 2020 [cited 2023 Jun 7];18:139-49. Available from: http://www.interventionjournal.org//text.asp?2020/18/2/139/301839 |
| Introduction | |  |
In Mexico, over 73,000 persons have disappeared since 1960, the vast majority since the beginning of the “war on drugs” initiated in 2006 (Amnesty International, 2019; Sheridan, 2020; Villegas, 2020), over 7,000 disappeared in 2019 alone (Sheridan, 2020). According to the International Convention for the Protection of All Persons from Enforced Disappearance (United Nations, 2007), enforced disappearance is defined as “the arrest, detention, abduction or any other form of deprivation of liberty by agents of the State or by persons or groups of persons acting with the authorisation, support or acquiescence of the State, followed by a refusal to acknowledge the deprivation of liberty or by concealment of the fate or whereabouts of the disappeared person, which place such a person outside the protection of the law” (Article 2; United Nations, 2007).
The situation of relatives of victims of acts of enforced disappearance is highly stressful and a source of much suffering due to the uncertainty with regard to the whereabouts of the disappeared person (Blaauw & Lähteenmäki, 2002), also termed “ambiguous loss” (Boss, 2002). Not knowing what has happened to a disappeared relative places an intolerable burden on those left behind (International Committee of the Red Cross, 2013). Social marginalisation and diminished community support have also been reported in families of missing persons (Robins, 2010). Silencing, inducement of guilt feelings, inducement to consider the missing person dead and impunity may exacerbate the impact of forced disappearance on families in a politically repressive context (Kordon et al., 1988).
Mental health conditions in relatives of missing persons bear similarities to those of traumatically bereaved persons. In bereaved persons, following the traumatic death of a loved one, different mental health conditions may (co-)occur. Specifically, these include prolonged grief reactions, known as prolonged grief disorder (World Health Organization, 2018) and persistent complex bereavement disorder (American Psychiatric Association, 2013), posttraumatic stress disorder (PTSD) and depressive disorders. Comorbidity of these conditions has been observed in numerous studies among traumatically bereaved individuals (Djelantik et al., 2020; Heeke et al., 2017; Lenferink et al., 2017; Nickerson et al., 2014; Schaal et al., 2012). In a group of Cambodian survivors 30 years after the loss of a loved one during the Khmer Rouge regime (N = 775), 32% endorsed depression, 11% endorsed PTSD and 14% endorsed prolonged grief reactions (Stammel et al., 2013).
Relatives of enforced disappeared persons may experience intense and persistent emotional reactions that may include prolonged grief reactions (Heeke et al., 2015) as well as PTSD and depression (Pérez-Sales et al., 2000; Sabin et al., 2003). Forced disappearance is associated with prolonged grief reactions, particularly when those left behind maintain hope that the disappeared person is still alive (Heeke et al., 2015; Lenferink et al., 2018). In a recent review of psychological responses among people with a missing loved one, the most consistently reported psychological symptoms were reports of depression, anxiety, posttraumatic stress and prolonged grief reactions (Kennedy et al., 2019). In another systematic review of studies among people confronted with forced disappearance due to war or state terrorism, a higher number of experienced traumatic events and closer kinship to the missing person were identified as risk factors for psychopathology (Lenferink et al., 2019).
Several studies comparing psychological distress in relatives of missing versus deceased persons due to violent circumstances found higher distress levels in the former group. These studies were among women in post war Bosnia and Herzegovina (Barakovic et al., 2013, 2014; Powell et al., 2010), women in Honduras (Quirk & Casco, 1994), adolescents in Bosnia and Herzegovina (Zvizdic & Butollo, 2001) and family members of disappeared persons in Sri Lanka (Isuru et al., 2019). In contrast, a study among internally displaced Colombians did not show significant differences in the severity of symptoms (Heeke et al., 2015). A study outside the context of armed conflict showed that homicidally bereaved people reported more severe prolonged grief reactions and PTSD than relatives of missing persons (Lenferin et al., 2017).
Distress in relatives of missing persons may be related to the context of ambiguity, unhelpful community reactions and absence of cultural and religious rituals to provide meaning to a loss (Hollander, 2016). A qualitative study among relatives of enforced disappeared persons during the Pinochet dictatorship in Chile (Adams, 2019) describes a rupture with the relatives’ predisappearance lives. The search for the disappeared person takes over everyday routines. Secondary stressors include impoverishment, further loss of children or spouse due to emigration, cutting off ties by the extended family, ending of friendships and avoidance by neighbours. Local human rights organisations and an association of relatives of disappeared persons become a main source of social support (Adams, 2019). Absence of legal and government responses (Amnesty International, 2016) increases the necessity for activism and collective engagement of the relatives of the disappeared persons in Mexico. Activism is manifested by constant claims for the presentation of the disappeared, showing of photographs in public, giving testimony and narratives about the disappeared (Karl, 2014) and may be seen as a fight for rehumanisation by the relatives of the disappeared (Karl, 2014), a battle for memory (De Vecchi Gerli, 2018). The absence of answers regarding the fate of the disappeared leads to an impossibility to perform death rituals. A permanent presence of the absent disappeared ensues (Karl, 2014).
As a result of barriers to care, many individuals with mental health conditions never pursue treatment (Jayasinghe et al., 2005) or receive inadequate care (Griffiths et al., 2014). These barriers can include the lack of perceived need for treatment, pessimism regarding the effectiveness of treatments and unavailability of treatment (Andrade et al., 2014). Among parents of children who have died from cancer, the most frequently reported barriers to seeking and finding support were that it was too painful to speak about the loss and too difficult to find help (Lichtenthal et al., 2015). Stigma is another barrier to mental health care. Stigma has been conceptualised as a negative and erroneous attitude about a person, which leads to negative action or discrimination (Corrigan & Penn, 2015). Public stigma refers to the extent to which an individual is aware of stereotypes held by society about persons who consult mental health services (Link, 1987; Skinner et al., 1995). Self-stigma refers to the application of these stereotypes to oneself, leading to internalised devaluation and disempowerment (Corrigan, 2002).
In Mexico, public mental health services are poorly developed (Berenzon Gorn et al., 2013; Lartigue & Vives, 2015; Wang et al., 2007). Of the total budget for health, only 2% is allocated for mental health, mainly in the operation of psychiatric hospitals (Berenzon Gorn et al., 2013; Pan American Health Organization, 2013). There is a need to integrate mental health care with primary care facilities (Alarcón, 2003). Although Mexico has a national mental health plan, social security coverage of mental disorders is limited and only some mental disorders are covered (Pan American Health Organization, 2013). In a report concerning disappearances in Coahuila (Sánchez Valdés, 2016) based on interviews with 94 relatives, 40% of respondents mentioned that they had not received counselling at any time after the disappearance of their loved one.
Psychosocial needs of relatives of missing persons have received scarce research attention, and no studies have yet examined barriers to care within this population. In the current study, the composite term “mental health and psychosocial support” is used to describe any type of local or outside support that aims to protect or promote psychosocial well-being and/or prevent or treat mental disorders (Inter-Agency Standing Committee (IASC), 2007). The current study seeks to identify mental health and psychosocial support needs of relatives of enforced disappeared persons in Mexico and to explore barriers to care. Study questions include: What are perceived (met and unmet) psychosocial needs of relatives of enforced disappeared persons? What are the perceived barriers to obtaining psychosocial support? And how is psychosocial support organised?
| Methods | | |
Setting
As part of the ongoing project, “Strengthening the Rule of Law in Mexico”, the German Corporation for International Cooperation (GIZ), providing services in the field of international cooperation for sustainable development and international education, commissioned a study to identify and systematise the psychosocial needs of indirect victims of enforced disappearance, in particular family members. The study was performed on behalf of the War Trauma Foundation. Data acquisition took place from 2 October 2016 to 13 October 2016. Participating relatives provided written informed consent and support providers provided oral consent. Transport expenses were reimbursed. All participants were provided with contact information of the study coordinators. For an up-to-date understanding of the research context from the perspective of an international agency, the UN Office of the High Commissioner of Human Rights was contacted before the start of the study. The preliminary findings from the current study were presented during a conference for relatives and support providers in Mexico City on 29 November 2016.
Selection of Interviewees
To answer our research questions, interviews were conducted with (1) representatives of both governmental and nongovernmental organisations (NGOs) working with relatives of enforced disappeared persons in Mexico, (2) members of self-support groups of relatives of disappeared persons, so-called Colectivos Familiares and (3) individual relatives of enforced disappeared persons. The different interview groups were selected in order to provide a multifaceted perspective on needs for psychosocial support as well as barriers to care among relatives of enforced disappeared persons in Mexico. Given security considerations, we chose to travel to areas where the situation was relatively safe, both for the participants as well as for the assessment team. These areas were Mexico City, Coahuila and Ciudad Juárez.
The assessment took place at the time that GIZ had organised a psychosocial workshop where members of Colectivos Familiares and NGOs from different places in the country were brought together in Mexico City. This offered the team the opportunity to interview relatives and representatives from different areas in the country that the team otherwise would not be able to reach.
Support Provider Interviews
The services of psychosocial support given to relatives of enforced disappeared persons in Mexico were mapped based on desktop research and information provided by the study commissioners in order to identify key informants. Support providers included seven professionals, psychologists and a legal advisor with extensive experience working with relatives of disappeared. Seven interviews with support providers to explore (unmet) needs and barriers to mental health and psychosocial support were conducted by a Spanish speaking medical doctor (MB). Support providers were also asked to assist with the identification of relatives of disappeared persons to be approached for study participation.
Interviews with Relatives and Focus Group Discussions
Five interviews with individual relatives were carried out. Interviews were conducted and recorded by a psychiatrist (GS) and a Spanish speaking medical doctor (MB). Focus group discussions with self-support groups of relatives, the so-called Colectivos Familiares, were also conducted and recorded by a psychiatrist (GS) and a medical doctor (MB). Four focus group discussions took place with the number of participating relatives ranging between four and nine, involving in total 24 relatives. An interpreter joined each interview and focus group discussion to solve language issues. All participants were Spanish speaking. Socio-demographic information was obtained, including gender, age, marital status, educational background, the relationship with the disappeared person and the time elapsed since the disappearance.
In line with previous studies (Glassock, 2006), a broad, open-ended question was asked to begin the interview, “Can you please tell me about your experience since (name of person) went missing?” Other questions included, “Did you need psychological support? When did you feel supported? What has been helpful to you in dealing with the disappearance?” The extent to which relatives still hoped their loved one to be alive was assessed by asking them, “How much hope do you have that your loved one is still alive?” (Heeke et al., 2015) and rating the answer on the following scale: not at all, a little, moderate, quite a bit, and a lot. Using open-ended questions, (unmet) needs and barriers to care were explored. Questions included “Among relatives of disappeared persons, do you think there is a lot of people that need psychological help? Is this help available? Who provided it? Was it helpful? What would you recommend to improve the support given to the relatives of enforced disappeared persons?”
Focus group discussions started by obtaining sociodemographic information, as well as the extent to which relatives still hoped their loved one to be alive. Questions to explore (unmet) needs and barriers to care were very similar to the individual interviews: “In your group, are there many people you would think need psychological help? Is this help available? Who provided it? Was it helpful? What would you recommend to improve the support to relatives of enforced disappeared persons?”
Analysis
Descriptive analyses were used to summarise demographic and background information. The two first authors applied content analysis to the data from the interviews and focus group discussions. First, we identified themes emerging from the interviews and focus group discussions with relatives and the interviews with support providers. Themes derived from interviews with support providers overlapped with the themes that were identified from interviews and discussions with the relatives, except the need for staff support, which was only mentioned by support providers. Second, we rated the frequency of occurrence of these themes across both the individual interviews and the focus group discussions. Third, we ordered the themes according to frequency of mentioning. Subsections of the interview and focus group discussions were analysed by the two authors independently to verify the results.
| Results | | |
Psychosocial Support Providers
Psychosocial support providers were identified at different levels, including self-support groups, NGOs, the private mental healthcare system, and State providers. The latter providers included the Comisión Ejecutiva de Atención a Víctimas and the Procuraduría General de la Republica’s psychological team, among others. [Table 1] above provides an overview of identified psychosocial support providers.
Characteristics of Interviewed Relatives
[Table 2] presents sociodemographic characteristics of the interviewed relatives. In brief, most relatives were female, middle-aged, and had received higher education. Most disappeared persons were male (apart from Ciudad Juárez, where most disappeared persons were females) and the mean time since the disappearance was six years.
Mental Health in Relatives of Disappeared Persons
All interviewed relatives reported and showed signs of severe emotional distress, including intense sadness, rage, despair, exhaustion, relational stress within families and loneliness. Frequently reported mental health symptoms included suicidal thinking, sleeplessness, anxiety, changes in appetite, intrusive memories, irritability and major role impairments.
Responses to the question “How much hope do you have that your loved one is still alive?” (Heeke et al., 2015) varied. One of the relatives described a feeling of “being torn apart between hope and despair”. Hope was experienced as both positive, “Hope keeps me going”, “We need to nurture the hope every day”, and painful, “Hope is part of my pain”. A wish for reunion with the disappeared loved one was often prominent “I want them to find him, so that I can rest and can put him to rest”. Hope for the disappeared to be alive could take on the form of imagining the current situation of the disappeared, “To perform forced labour, that is why they take young men”.
Relatives reported exposure to a variety of additional stressors secondary to the disappearance, including receiving death threats, social exclusion and discrimination (e.g., not being hired for jobs, children being shut out by peers), financial problems and being denied access to justice.
For all relatives, their sense of identity appeared to have been changed by the disappearance of their loved one. They introduced themselves as “the father, the mother, the brother or sister” of the disappeared loved one. Some also mentioned that they had found strengths they never knew they had, for example the strength to confront authorities and to testify.
Met and Unmet Mental Health and Psychosocial Support Needs
[Table 3] presents an overview of (unmet) needs for psychosocial support with frequencies of mentioning by relatives and support providers respectively. The need for emotional support was the most frequently expressed need by relatives. Within focus groups, peer support was acknowledged: “Here we are not judged, and our children are not judged”. “My only family now is the colectivo”. Relatives experience social exclusion and stigmatisation by the community,“They avoid us as if we are diseased (having plague) and that hurts”. Several relatives mentioned that they had tried to keep the disappearance a secret because otherwise this would decrease their chances of being hired for jobs. Others talked about their children being excluded by peers. Relatives expressed feeling distanced from their circle of family and friends. Many relatives do not see their friends and family anymore,“We have nothing left to talk about”.
The second, most frequently mentioned need by relatives included support when in contact with law enforcement officers. Not being taken seriously by authorities and remarks such as “I’m sure your son is just drunk”, “He must be off with a new girlfriend”, and “He must be involved with narcos”, were experienced as hurtful, heightened the stress and caused distrust regarding the search efforts undertaken by authorities. Several relatives mentioned that authorities had shown them photographs or videos of human remains, often gruesome images, telling them that their relative was amongst these remains without formal proof (e.g., DNA research). Others were promised support on the condition that they would stop their search.
The need for treatment of mental health conditions was mentioned frequently by relatives and support providers. However, only a few relatives mentioned that the received professional mental health support had been helpful (see also the next paragraph). The need for religious support was mentioned by relatives, but not by service providers.
The need for support during search efforts, as well as before, during and after exhumations, was indicated more often by support providers than relatives. However, relatives indirectly indicated this specific type of support needs. They reported that being confronted with presumed remains of the disappeared led to varying reactions. For one mother, the remains represented a bond with the deceased, “When I feel bad, I go to the piece of bone that I received, and we talk together”. However, lack of trust in authorities, sometimes combined with the hope for the disappeared to be alive, led many relatives not to believe that the remains are of their lost loved one. “They just give me a bone to shut me up”. “I want my daughter; I don’t want a piece of bone”.
Several relatives mentioned that family support would be helpful because the disappearance took a serious toll on their family life. Within families, reactions to the disappearance of relatives differed, sometimes leading to tensions among family members. Eight of the 25 interviewees (32%) who were married at the time of the disappearance of their child, mentioned that tension with their spouse, as a result of the disappearance and different approaches to searching, had led to divorce. As one relative mentioned, “I am divorced because we had very different ways of assimilating the pain.”
The search for the missing loved one was mentioned to be so overwhelming that relatives often did not know what to do and where to start. Support in setting priorities regarding the many actions needed to be taken following the disappearance was highly appreciated by the relatives who had experienced this kind of support. As the search for a missing child could take much time and resources, it was hard for parents to keep up with taking care of their other children. One mother mentioned that because of her dedication to the search for her missing son, she did not attend the graduation of her daughter. Her daughter had told her, “Do you realise I have not only lost my brother? I have lost you too.” Some parents reported that their children had feelings of guilt following the disappearance. Some parents reported keeping their children at home out of fear that they would also disappear. One parent mentioned that her daughter became rebellious and wanted to go out at night, hoping to be kidnapped just like her sister, so they would be reunited and she could help her sister to escape. Some mothers covered up the disappearance of their partner (Daddy had an accident), while others brought their children to protest marches or on searches for mass graves.
A psychosocial support need that was mentioned by three of the seven support providers, but not by any of the relatives, was the need for staff support. Support providers expressed feeling emotionally burdened by the problems faced by the relatives and aired concerns regarding their own safety.
Barriers to Psychosocial Support
As shown in [Table 4], the most frequently identified barrier to obtaining professional psychosocial support for relatives was having a negative opinion about available services. This opinion appeared to be rooted in negative experiences. Pressure for closure was experienced negatively: “They tell me to stop searching, but I cannot, a mother has a heart for who is with us and who we lost.” “He kept saying that I had to stop searching, but I cannot live without my son.” A father who was wearing his son’s clothes in order to feel close to him reported that he had been asked, “Why are you wearing the clothes of a ghost?” Other examples of pressure for closure from the side of support providers that were reported by the relatives included, “Why do you continue? Aren’t you afraid? Move on with your life, why don’t you spend your energy on those you still have?” Several interviewees described how little time there was available for consultations and that they found it hard to be attended by different people each time. Not knowing where to get help and lack of available services in their neighbourhood were also among the most frequently mentioned barriers. Barriers that were frequently mentioned by support providers included care provider discontinuity and not having adequate transportation.
| Discussion | | |
Relatives of enforced disappeared persons in Mexico have been confronted with a variety of severe stressors and potentially traumatic events, such as intense and prolonged uncertainty about the whereabouts of their loved ones, difficulties with representatives of the law, incrimination, stigmatization, intimidation, and even death threats. Most relatives expressed a clear need for psychosocial support and experienced barriers for obtaining such support. The most frequently expressed needs for psychosocial support included peer support, support while contacting the law, treatment of mental health conditions, religious support and family support. The most frequently encountered barriers included having a negative opinion about the quality of available services, feelings of judgment from other people, and not knowing where to get help.
The different frequencies in which interviewed relatives and support providers described needs and barriers appear to reflect the difference in experiences between interviewed agencies and relatives. For example, the fact that only two interviewed relatives had received the remains of their loved ones may explain the relatively low number of relatives that mentioned the need for psychosocial support when remains are returned to families. Despite these differences, there was a high level of agreement between themes raised by support providers and relatives. This is consistent with a high level of commitment and collective engagement that seems to characterise the efforts of the support providers involved in our study.
Among relatives of missing persons with high levels of distress, holding onto hope that the loved one will return may be seen as a strategy to avoid emotions associated with the thought that the separation is permanent (Clark et al., 2009). However, pressure for closure paradoxically leads to increased resistance (Boss, 2002) and may in the context of enforced disappearance serve politically repressive aims (Kordon et al., 1988). Unlike treatment for bereavement-related psychopathology, an intervention for relatives of missing persons should not be focused on closure or coming to terms with the irreversibility of the loss, but on tolerating the ambiguity surrounding the loss (Boss, 2002; Kordon et al., 1988; Lenferink et al., 2016; Robins, 2010). Mental health professionals dealing with relatives of missing persons may, therefore, label the situation as one of ambiguous loss (Boss, 2002), externalise the cause to alleviate guilt and normalise emotional reactions. They need to refrain from pressure for closure. Family relational problems may be approached by engaging other family members in the treatment and encouraging them to share their perceptions, even though they differ (Boss, 2002). The needs of siblings of missing young persons deserve special attention (Clark et al., 2009).
The problems faced by relatives of disappeared persons occur at the intersection of sociopolitical, cultural and biopsychosocial dynamics. Underlying sociopolitical causes of enforced disappearance include organised crime practices, insufficient policies (e.g., failure to search for the victims of disappearance in order to determine their fate and whereabouts), insufficient laws (e.g., lack of a proper legal definition of disappearances carried out by nonstate actors), and events (Amnesty International, 2016). Cultural factors may increase the risk of enforced disappearance for individuals belonging to vulnerable groups (e.g., indigenous communities, migrants, children, women, journalists and human rights defenders; De Vecchi Gerli, 2018) and shape individual and collective responses, including mental health responses (Beristain et al., 2017; Karl, 2014). Individual reactions may additionally be understood within a biopsychosocial framework. Our study is unique in applying a mental health and psychosocial support perspective to the situation of relatives of disappeared persons. Given the scale of the problem, both within Mexico and globally, improving mental health and psychosocial support for relatives of disappeared persons is a key priority.
There is a need to protect and promote the mental health and wellbeing of staff and volunteers working in complex and sometimes dangerous circumstances (Connorton et al., 2011). Staff support is essential for all volunteers and professionals involved in mental health and psychosocial support of relatives of disappeared persons. It includes information on prevention of burnout and dealing with criminal threat, as well as opportunities for intervision and supervision on a structural basis.
Study Strengths and Limitations
The current study provides unique empirical data on mental health and psychosocial support needs as well as barriers to obtaining psychosocial support in relatives of enforced disappeared persons. Some important limitations must be kept in mind when interpreting the results. First, we only had access to people who were supported by a self-help group or NGO. Thus, our findings may underestimate the needs of a substantial number of relatives who lack such support and cannot be generalised to all relatives of disappeared persons in Mexico. Second, the mapping of psychosocial support providers is limited to certain geographical areas. Third, due to the bilingual nature of the data, the interviews and focus groups discussions were not transcribed. However, we performed content analysis immediately following the interviews and focus groups discussions and checked subsections of the audio recordings independently for verification. Fourth, our participants were selected based on practical considerations rather than representativeness. According to official figures, 74% of the overall reported disappeared persons are men (Villegas, 2020), against 86.2% in our sample. In our sample, all participants were Spanish-speaking and their experiences may not be representative for non-Spanish-speaking relatives. For example, some relatives of missing persons associated with the infamous mass kidnapping from Ayotzinapa Rural Teachers’ College in 2014 were non-Spanish speaking (Beristain et al., 2017). The lack of data on (relatives of) missing persons in Mexico precludes any firm conclusion from being drawn about representativeness.
Implications for Practice and Research
Basic guidance and do’s and don’ts for law enforcement personnel and other public officials regarding communication with relatives of disappeared persons could help prevent additional stress to the emotional burden of relatives. [Table 5] presents some basic do’s and don’ts, adapted from the do’s and don’ts from the IASC Guidelines on MHPSS in Emergency Settings (Inter-Agency Standing Committee (IASC), 2007) and the Psychological First Aid Guide (World Health Organization, War Trauma Foundation, & World Vision International, 2011). Locally adapted basic guidance should ideally go through a consultation process with relatives themselves and different actors in the field of mental health and psychosocial support. A strategy to disseminate the guidance should then be prepared and implemented.
There is currently very limited empirical evidence supporting the effectiveness of psychological interventions in relatives of missing persons. Symptoms of PTSD, depression and prolonged grief may be addressed using empirically supported interventions for dealing with traumatic loss, including psycho-education, mobilising social support, exposure and behavioural activation (Smid et al., 2015). A small study using dialogic exposure yielded preliminary evidence for beneficial effects in relatives of war-missing persons (Hagl et al., 2015). In a pilot study among Dutch adults who reported clinical levels of psychological distress following the disappearance of a significant other, cognitive behavioural therapy with mindfulness coincided with reductions in psychopathology levels (Lenferink et al., 2019). In the former Yugoslavia, community-based interventions combining education projects and participation in ante mortem data collection as well as providing a support network for families of the missing have been found beneficial (Keogh et al., 2002). Integrated forensic expertise and psychosocial support may be useful for addressing the psychosocial needs of families in order to resolve uncertainty and to recover the remains of their loved ones (Keogh et al., 2002). A model of psycholegal accompaniment represents an interdisciplinary approach, based on close collaboration between the psychological and legal teams (Rivera-Holguin et al., 2019), resembling the approach that was used when supporting relatives of missing persons of those kidnapped from Ayotzinapa Rural Teachers’ College in 2014 (Beristain et al., 2017). Because empirical evidence is largely lacking, more studies are urgently needed to increase insight in the effectiveness of mental health and psychosocial support interventions for relatives of missing persons.
Information on available mental health and psychosocial services for relatives of disappeared persons needs to be available to the relatives. Mental health and psychosocial support to relatives of enforced disappeared persons needs to be integrated into the academic curricula of psychologists, psychiatrists and other mental healthcare providers.
Many relatives expressed that the support they received from peers, the support they were able to provide to peers, as well as the sharing of information is very important to them. Strengthening peer support groups is essential, as this promotes practical support, sharing of information, and emotional support. Within peer support groups, maintaining hope as a group norm and/or moral imperative is not recommended as it may impair emotional processing.
Culturally sensitive psychosocial support for relatives of disappeared persons in Mexico integrates collectivistic approaches to psychotherapy (Qureshi, 2020), normalises emotional responses to ambiguity (Boss, 2002), charts culturally appropriate rituals that may facilitate coping (Smid et al., 2018) and explores spiritual matters from a place of authenticity (Qureshi, 2020).
The findings in this study emphasise the need to provide practical support information to relatives of disappeared persons as well as to provide emotional support in dealing with uncertainty and grief or reconnection that may ensue the search process. Given the severity of suffering associated with ambiguous loss and the ubiquity of ambiguous loss in humanitarian crisis situations across the globe, there is an urgent need for further research and advocacy to improve availability of and access to effective mental health and psychosocial support interventions for relatives of disappeared persons.
Acknowledgement
The authors are very grateful to the relatives of disappeared persons who shared their experiences and recommendations for an improved mental health and psychosocial support. We appreciate the willingness of representatives of all institutes, agencies and NGOs we interviewed, for their time and support during our stay in Mexico. We are thankful to GIZ for acknowledging the importance of MHPSS to relatives of enforced disappearance and for proposing this study in their project “Strengthening the Rule of Law in Mexico”. We very much appreciated the support GIZ staff provided us during the preparation and implementation of this study and during our stay in Mexico.
Financial support and sponsorship
Some of the work for this study was supported by War Trauma Foundation (WTF) and Deutsche Gesellschaft für internationale Zusammenarbeit (GIZ). This study was funded in part by WTF and GIZ. Staff at WTF and GIZ participated in the development of the scope of work and reviewed early draft manuscripts. Copyright assertion from WTF and GIZ was required before the manuscript could be submitted for publication, but the authors are solely responsible for the content and the decision to submit it for publication.
Conflicts of interest
There are no conflicts of interest.
| References | | |
| 1. | |
| 2. | Alarcón R. (2003). Mental health and mental health care in Latin America. World Psychiatry, 2, 54-56.  |
| 3. | American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). American Psychiatric Association. |
| 4. | Amnesty International. (2016). “Treated with indolence”: The state’s response to disappearances in Mexico. Amnesty International Publications. |
| 5. | Amnesty International. (2019). Human rights in the Americas Review of 2019. Amnesty International Ltd. |
| 6. | Andrade L. H., Alonso J., Mneimneh Z., Wells J. E., Al-Hamzawi A., Borges G., Bromet E., Bruffaerts R., De Girolamo G., De Graaf R., Florescu S., Gureje O., Hinkov H. R., Hu C., Huang Y., Hwang I., Jin R., Karam E. G., Kovess-Masfety V., ...Kessler R. C. (2014). Barriers to mental health treatment: Results from the WHO World Mental Health surveys. Psychological Medicine, 44(6), 1303-1317. |
| 7. | |
| 8. | Barakovic D., Avdibegovic E., Sinanovic O. (2014). Posttraumatic stress disorder in women with war missing family members. Psychiatria Danubina, 26, 340-346. |
| 9. | Berenzon Gorn S., Saavedra Solano N., Medina-Mora Icaza M. E., Aparicio Basauri V., Galvan Reyes J. (2013). Evaluacion del sistema de salud mental en Mexico: Hacia donde encaminar la atencion? [Evaluation of the mental health system in Mexico: where is it headed?]. Revista Panamericana de Salud Publica, 33, 252-258. https://doi.org/0.1590/S1020-49892013000400003 |
| 10. | Beristain C. M., Villa A., Ruiz A., Vial F. (2017). La atención y centralidad de las víctimas. In Metodologías de investigación, búsqueda y atención a las víctimas: Del caso de Ayotzinapa a nuevos mecanismos en la lucha contra la impunidad. FLACSO-México. |
| 11. | Blaauw M., Lähteenmäki V. (2002). ‘Denial and silence’’ or ‘acknowledgement and disclosure’. Revue Internationale de la Croix-Rouge/International Review of the Red Cross, 84, 767-784. https://doi.org/10.1017/S156077550010416X |
| 12. | Boss P. (2002). Ambiguous loss in families of the missing. The Lancet, 360(Suppl 1), s39-s40. |
| 13. | |
| 14. | Connorton E., Perry M. J., Hemenway D., Miller M. (2011). Humanitarian relief workers and trauma-related mental illness. Epidemiologic Reviews, 34, 145-155. https://doi.org/10.1093/epirev/mxr026 |
| 15. | Corrigan P. W. (2002). Empowerment and serious mental illness: Treatment partnerships and community opportunities. Psychiatric Quarterly, 73, 217-228. |
| 16. | |
| 17. | De Vecchi Gerli M. (2018). ¡Vivxs Lxs Queremos!: The Battles for Memory Around the Disappeared in Mexico. University College London. |
| 18. | Djelantik A. A. A. M. J., Robinaugh D. J., Kleber R. J., Smid G. E., Boelen P. A. (2020). Symptomatology following loss and trauma: Latent class and network analyses of prolonged grief disorder, posttraumatic stress disorder, and depression in a treatment-seeking trauma-exposed sample. Depression and Anxiety, 37, 26-34. https://doi.org/10.1002/da.22880 |
| 19. | |
| 20. | Griffiths K. M., Carron-Arthur B., Parsons A., Reid R. (2014). Effectiveness of programs for reducing the stigma associated with mental disorders. A meta−analysis of randomized controlled trials. World Psychiatry, 13, 161-175. |
| 21. | Hagl M., Powell S., Rosner R., Butollo W. (2015). Dialogical Exposure with Traumatically Bereaved Bosnian Women: Findings from a Controlled Trial. Clinical Psychology & Psychotherapy, 22, 604-618. |
| 22. | Heeke C., Stammel N., Heinrich M., Knaevelsrud C. (2017). Conflict-related trauma and bereavement: exploring differential symptom profiles of prolonged grief and posttraumatic stress disorder. BMC Psychiatry, 17, 118. https://doi.org10.1186/s12888-017-1286-2 |
| 23. | Heeke C., Stammel N., Knaevelsrud C. (2015). When hope and grief intersect: Rates and risks of prolonged grief disorder among bereaved individuals and relatives of disappeared persons in Colombia. Journal of Affective Disorders, 173, 59-64. https://doi.org/10.1016/j.jad.2014.10.038 |
| 24. | Hollander T. (2016). Ambiguous loss and complicated grief: understanding the grief of parents of the disappeared in Northern Uganda. Journal of Family Theory & Review, 8, 294-307. https://doi.org/10.1111/jftr.12153 |
| 25. | Inter-Agency Standing Committee (IASC). (2007). IASC Guidelines on Mental Health and Psychosocial Support in Emergency Settings. IASC. |
| 26. | |
| 27. | Isuru A., Hewage S. N., Bandumithra P., Williams S. S. (2019). Unconfirmed death as a predictor of psychological morbidity in family members of disappeared persons. Psychological Medicine, 49, 2764-2771. https://doi.org/10.1017/S0033291718003793 |
| 28. | Jayasinghe N., Spielman L., Cancellare D., Difede J., Klausner E. J., Giosan C. (2005). Predictors of treatment utilization in world trade center attack disaster workers: Role of race/ethnicity and symptom severity. International Journal of Emergency Mental Health, 7, 91. |
| 29. | |
| 30. | Kennedy C., Deane F. P., Chan A. Y. C. (2019). In limbo: A systematic review of psychological responses and coping among people with a missing loved one. Journal of Clinical Psychology, 75(9), 1544-1571. https://doi.org/10.1002/jclp.22799 |
| 31. | Keogh E., Ayers S., Francis H. (2002). Does anxiety sensitivity predict post-traumatic stress symptoms following childbirth? A preliminary report. Cognitive Behaviour Therapy, 31, 145-155. |
| 32. | Kordon D. R., Edelman L. I., Lagos D. M., Nicoletti E. B. R. C. (1988). Psychological Effects of Political Repression. Sudamericana/Planeta. |
| 33. | Lartigue T., Vives J. (2015). Mental health services in Mexico. Journal of Sociology and Social Welfare, 18, 57-73. |
| 34. | Lenferink L. I. M., de Keijser J., Smid G. E., Djelantik A. A. A. M., Boelen P. A. (2017). Prolonged grief, depression, and posttraumatic stress in disaster-bereaved individuals: latent class analysis. European Journal of Psychotraumatology, 8, 1298311. https://doi.org/10.1080/20008198.2017.1298311 |
| 35. | Lenferink L. I. M., de Keijser J., Wessel I., Boelen P. A. (2018). Cognitive-behavioral correlates of psychological symptoms among relatives of missing persons. International Journal of Cognitive Therapy, 11, 311-324. https://doi.org/10.1007%2Fs41811-018-0024-y |
| 36. | Lenferink L. I. M., de Keijser J., Wessel I., Boelen P. A. (2019). Cognitive behavioural therapy and mindfulness for relatives of missing persons: A pilot study. Pilot and Feasibility Studies, 5, 93. https://doi.org/10.1186/s40814-019-0472-z |
| 37. | Lenferink L. I. M., de Keijser J., Wessel I., de Vries D., Boelen P. A. (2019). Toward a better understanding of psychological symptoms in people confronted with the disappearance of a loved one: a systematic review. Trauma, Violence, & Abuse, 20, 287-302. https://doi.org/10.1177/1524838017699602 |
| 38. | Lenferink L. I. M., van Denderen M. Y., de Keijser J., Wessel I., Boelen P. A. (2017). Prolonged grief and post-traumatic stress among relatives of missing persons and homicidally bereaved individuals: A comparative study. Journal of Affective Disorders, 209, 1-2. https://doi.org/10.1016/j.jad.2016.11.012 |
| 39. | Lenferink L. I. M., Wessel I., de Keijser J., Boelen P. A. (2016). Cognitive behavioural therapy for psychopathology in relatives of missing persons: study protocol for a pilot randomised controlled trial. Pilot and Feasibility Studies, 2, 1-12. |
| 40. | Lichtenthal W. G., Corner G. W., Sweeney C. R., Wiener L., Roberts K. E., Baser R. E., Li Y., Breitbart W., Kissane D. W., Prigerson H. G. (2015). Mental health services for parents who lost a child to cancer: If we build them, will they come? Journal of Clinical Oncology, 33 (20), 2246-2253. https://doi.org/10.1200/JCO 2014. 59.0406 |
| 41. | Link B. G. (1987). Understanding labeling effects in the area of mental disorders: An assessment of the effects of expectations of rejection. American Sociological Review, 52, 96-112. |
| 42. | Nickerson A., Liddell B., Maccallum F., Steel Z., Silove D., Bryant R. (2014). Posttraumatic stress disorder and prolonged grief in refugees exposed to trauma and loss. BMC Psychiatry, 14, 106. https://doi.org/10.1186/1471-244X-14-106 |
| 43. | Pan American Health Organization. (2013). WHO-AIMS: Report on Mental Health Systems in Latin America and the Caribbean. PAHO. |
| 44. | Pérez-Sales P., Durán-Pérez T., Herzfeld R. B. (2000). Long-term psychosocial consequences in first-degree relatives of people detained disappeared or executed for political reasons in Chile. Psicothema, 12(Suppl 1), 109–116. |
| 45. | Powell S., Butollo W., Hagl M. (2010). Missing or killed : The differential effect on mental health in women in Bosnia and Herzegovina of the confirmed or unconfirmed loss of their husbands. European Psychologist, 15, 185-192. https://doi.org/10.1027/1016-9040/a000018 |
| 46. | Quirk G. J., Casco L. (1994). Stress disorders of families of the disappeared: A controlled study in Honduras. Social Science Medicine, 39(12), 1675-1679. |
| 47. | Qureshi A. (2020). Cultural competence in psychotherapy. In Schouler-Ocak M., Kastrup M. C. (Eds.), Intercultural Psychotherapy: For Immigrants, Refugees, Asylum Seekers and Ethnic Minority Patients (pp. 119-130). Springer International Publishing. |
| 48. | Robins S. (2010). Ambiguous Loss in a Non-Western Context: Families of the Disappeared in Postconflict Nepal. Family Relations, 59, 253-268. |
| 49. | Sabin M., Lopes C. B., Nackerud L., Kaiser R., Varese L. (2003). Factors associated with poor mental health among Guatemalan refugees living in Mexico 20 years after civil conflict. JAMA: The Journal of the American Medical Association, 290, 635-642. https://doi.org/10.1001/jama.290.5.635 |
| 50. | Sánchez Valdés V. M. (2016). Diagnóstico de necesidades para la implementación del Programa de Atención Integral a Familiares de Personas Desaparecidas en Coahuila (PROFADE). Academia Interamericana de Derechos Humanos de la Universidad Autónoma de Coahuila. |
| 51. | Schaal S., Dusingizemungu J. P., Jacob N., Neuner F., Elbert T. (2012). Associations between prolonged grief disorder, depression, posttraumatic stress disorder, and anxiety in Rwandan genocide survivors. Death Studies, 36, 97-117. https://doi.org/10.1080/07481187.2011.573177 |
| 52. | |
| 53. | Skinner L. J., Berry K. K., Griffith S. E., Byers B. (1995). Generalizability and specificity of the stigma associated with the mental illness label: A reconsideration twenty−five years later. Journal of Community Psychology, 23, 3-17. |
| 54. | Smid G. E., Groen S., de la Rie S. M., Kooper S., Boelen P. A. (2018). Toward cultural assessment of grief and grief-related psychopathology. Psychiatric Services, 69, 1050-1052. https://doi.org/10.1176/appi.ps.201700422 |
| 55. | Stammel N., Heeke C., Bockers E., Chhim S., Taing S., Wagner B., Knaevelsrud C. (2013). Prolonged grief disorder three decades post loss in survivors of the Khmer Rouge regime in Cambodia. Journal of Affective Disorders, 144 (1-2), 87-93. https://doi.org/10.1016/j.jad.2012.05.063 |
| 56. | |
| 57. | |
| 58. | Wang P. S., Aguilar-Gaxiola S., Alonso J., Angermeyer M. C., Borges G., Bromet E. J., Bruffaerts R., De Girolamo G., De Graaf R., Gureje O., Mario Haro J., Karam E. G., Kessler R. C., Kovess V., Lane M. C., Lee S., Levinson D., Ono Y., Petukhova M., ...Wells J. E. (2007). Use of mental health services for anxiety, mood, and substance disorders in 17 countries in the WHO world mental health surveys. The Lancet, 370(9590), 841-850. https://doi.org/10.1016/S0140-6736(07)61414-7 |
| 59. | World Health Organization. (2018). International Classification of Diseases, 11th Revision. World Health Organization. |
| 60. | World Health Organization, War Trauma Foundation, & World Vision International. (2011). Psychological first aid: Guide for field workers. World Health Organization. |
| 61. | |
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]
|
Search Pubmed for