Phobias are often fears of a particular object or situation. Commonly feared objects and situations in specific phobias include animals, tunnels, water and heights. The most common specific phobia is fear of public speaking. People with social phobia have a fear of being judged by others, being embarrassed or being humiliated. This fear may interfere with work or school and other ordinary activities.
Individuals with OCD are plagued by persistent, unwelcome thoughts and images or by the urgent need to engage in certain rituals. Some OCD sufferers may only have obsessive thoughts without the related rituals. The disturbing thoughts or images e. For example, people who are obsessed with germs may wash their hands excessively. The individual is not happy to be performing the ritual behaviors but finds this to be the only way to get temporary relief from the obsessive thought.
Individuals with PTSD may experience depression, flashbacks, nightmares, sleep difficulties, irritability, aggression, violence, and a feeling of detachment or numbness. Symptoms can be triggered by anything that reminds the individual of their trauma. Panic attacks can be caused by heredity, chemical imbalances, stress and the use of stimulants such as caffeine or drugs. Some people have only one or two attacks and are never bothered again.
Panic attacks can occur with other psychiatric disorders. In panic disorders, however, the panic attacks return repeatedly and the person develops an intense fear of having another attack. Without help, this "fear of fear" can make people avoid certain situations and can interfere with their lives even when they are not having a panic attack.
Therefore, it is very important to recognize the problem and get help. Some people believe that anxiety disorders can be overcome with willpower, but this is not likely. Untreated anxiety disorders can lead to depression, substance abuse and a range of other problems. If your normal routine is interrupted by excessive worry, you should seek help from a professional. If you, or someone you know, has symptoms of anxiety disorder, visit a clinician, who can help determine whether the symptoms are due to an anxiety disorder, medical condition or both. Frequently, the next step in getting treatment for an anxiety disorder is referral to a mental health professional such as a psychiatrist, psychologist, social worker or counselor.
In general, two types of treatment are available, medication and psychotherapy sometimes called "talk therapy". Both can be effective for most disorders. The choice of one or the other, or both, depends on the patient's and the clinician's preference, and also on the particular anxiety disorder. Toggle navigation Toggle search. Anxiety Disorders and Panic Attacks.
On this page: What is anxiety? Tips for dealing with a panic attack Tips for helping someone with an anxiety disorder When should I get help? Symptoms of anxiety disorders: Anyone may experience these symptoms during stressful times.
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What is a panic attack? Tips for dealing with a panic attack Adapted from "Understanding Panic Disorders," National Institute of Health Realize that although your symptoms are frightening, they are an exaggeration of normal stress reactions and aren't dangerous or harmful. Face the feelings rather than fighting them, and they will become less intense. Don't add to the panic by asking "What if?
Notice what is actually happening rather than what you think might happen. Rate your fear level on a scale of 1 to 10 and watch it change. Notice that it doesn't stay at a high level for more than a few seconds. Program components may include supportive employment, self-help groups, community day programs and club houses, empowerment for advocacy, and other best practices typically provided in high income countries [ 10 ].
Lund et al. Others have looked at participation in advocacy [ 28 ], or a mixture of professional treatment and self-help group participation [ 9 , 20 ]. However, these studies provide little to no detail regarding how the groups were structured, what activities they carried out, who provided leadership, or the impact of the program at various social levels individual, family, community, organization and society. The present study will provide a unique qualitative analysis on a wide variety of benefits and levels of impact for participants, from typical psychosocial benefits for individuals to social capital, leadership, advocacy, and organizational role.
This study seeks to increase understanding of user and family self-help programs within the context of Latin America; to explore whether and to what extent the Family Education, Support and Empowerment Program FESEP is perceived as potentially effective and satisfying by its participants; to help the program build evaluation capacity and opportunities for program improvements; and to lay the groundwork for further quantitative study by identifying potential indicators to help evaluate program impact.
Volunteer professionals and paid staff partner with user and family caregivers to facilitate the program. The FESEP program provides education through trained volunteer family instructors, a monthly associational meeting for support, education and advocacy, limited home intervention for member families in crisis, a weekly psychosocial group for persons with mental illness, very limited income generation support for users and their family members, periodic national forums on mental health and disability rights, opportunities for legislative advocacy and service on national health and disability rights commissions, and training of community workers in institutions that have a direct impact on the quality of life of users and family members, such as psychiatric hospital personnel and police officers [ 28 ].
While the program includes several components similar to the NIMH RAISE Early Treatment Program for example, family education and supportive employment [ 29 ], the program lacks funding to provide medications or individual professional resiliency therapy. For the purposes of this study, researchers defined leadership from the perspective of participatory leadership.
That is, a leader is anyone within the group taking responsibility for assisting others, facilitating group dynamics or decision-making, serving as a representative to coalitions or commission, or participating in the Coordination Team. A leader is not defined by position within the legal structure of the organization authority , training, being an employee of the organization, or educational degree. Researchers carried out a qualitative evaluation using a focus group [ 30 — 32 ] and used a technique that adds value to the program by helping it to determine potential outcomes and impacts, help program participants see what they have achieved [ 33 ], and help organizational leaders develop greater evaluation and research capacity [ 34 ].
Researchers employed a combination of pragmatic and critical-emancipatory approaches [ 35 , 36 ]. The specific focus group approach employed in this study is based on that used by Averett, Carawan and Burroughs [ 37 ] in which program participants and staff would make up the focus group together. Researchers assisted participants to complete an individualized questionnaire as a concurrent validity tool. The questionnaire included sociodemographic information and leadership and trust questions in the form of Likert scales.
These questions were modeled after questions from the World Values Survey, but were not piloted. For the focus group sessions, we asked a series of 11 closed to open-ended questions to the focus group. Questions were fully explained and participant questions responded to before launching into open discussion. We managed interpretation through a group of three investigators from two different cultures, and we shared moderator responsibilities between a lead and an assistant moderator.
Creswell and Miller [ 35 , 38 ] recommend that researchers engage in at least two of eight validity strategies for qualitative studies, this study engaged in six to try to strengthen the qualitative validity. The most prominent barriers to better participation were inability to find others to care while the family caregiver attends the class, cost of transportation, inability to take time off every Saturday morning evening classes are considered too dangerous, and public transportation stops running by 8 pm.
For lack of epidemiological studies of mental health in El Salvador, we do not know how many people with mental illness there are in El Salvador or how many lack services. Tripling that number to 1. The focus group met twice in March , and was composed of ten persons: three persons with diagnoses of schizophrenia two men and one woman , four family caregivers three female siblings and one mother; all had loved ones with a diagnosis of schizophrenia , and three program staff a paid male psychologist, a volunteer female psychiatrist, and a volunteer program founder who is also a male caregiver with a brother with schizophrenia.
Criteria for focus group participants was jointly arrived at among the researchers. Inclusion criteria included being a user, family caregiver, or program staff or volunteer; being active participant of the program; and having substantial experience with a variety of program components over several years. Users and family caregivers were selected by the Salvadoran nonprofit mental health organization ACISAM that runs the intervention and has positive long-term relationships with users and family caregiver participants. Participants were contacted by phone or in person.
A qualitative exploration of a family self-help mental health program in El Salvador
All those approached agreed to participate in the study and signed informed consent for the consent form see Additional file 1. Focus group sessions were later held in a quiet, comfortable salon that provided lunch and snacks. None of the participants dropped out of the study. Participants ranged from 21 to 62 in age, six were females, four were males, and all three users had the illness of schizophrenia while the family caregivers likewise had loved ones who suffered from schizophrenia, although the selection for this illness was not purposive but rather indicates the preponderance among program participants of this illness type.
Participants were selected for stability, ability to communicate, and breadth and length of time participating in the program. Individualized questionnaires were completed by all 10 members prior to the focus group meetings in order to collect demographic and Likert scale responses on program effectiveness, satisfaction and social capital measured by trust.
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A researcher was present to assist each person in completing the written questionnaire and clarify meanings for the individualized questionnaire see Additional file 2. Researchers met to discuss questions and discrepancies in the responses. A second questionnaire was used to guide the focus group discussion, which was led by the principal investigator with assistance from the co-investigators. Questions were provided to the participants but not piloted and ranged from closed to open-ended. To minimize adverse power-dynamics, users responded first to questions, followed by family caregivers, and finally by professionals.
Then the space was opened for anyone to comment again. It was not necessary to repeat any assisted questionnaires or focus group sessions. Recordings were transcribed for the full anonymous transcript in Spanish see Additional file 3. The lead researcher and two Salvadoran co-investigators performed analysis, and themes were determined by consensus. Conclusions were shared with focus group participants and others in the program for comments and reflection.
The questionnaires were then translated into Spanish and the two Salvadoran researchers worked with the US lead researcher to ensure that the meaning was both accurately translated and would be clearly understood by focus group participants in the Salvadoran context. The data in the original Spanish was the basis for the summaries and analysis of the data. Risks and risk mitigation were addressed in the consent form see Additional file 1.
All investigators received human subjects research certification, either via James Madison University or a Spanish version hosted by the US National Institutes of Health. The individual questionnaires demonstrated that focus group members were diverse in gender, age and stakeholder mix, but less so in relation to illness type. Focus group members generally reflected the lower end of the socioeconomic scale despite having a high educational level overall.
Program participation averaged of 5. All family members had completed the education class, and all users had participated in the weekly psychosocial user group. Family caregivers struggled to get their ill family member to attend the psychosocial group due to denial or illness severity. However, frequently the family member and professional support staff were able eventually to achieve participation by loved ones of family caregivers.
Comparison of users, caregivers and professionals by duration of participation in principal program components. Due to these factors, the numbers listed here for users may be high. Some improvements were indirect for users, such as when a user was non-compliant and uninterested in participating in the FESEP program, but family member participation resulted in perceived increase in understanding and better family treatment toward the ill person in the home.
Quotes from users and caregivers related to feelings of being accepted, happy, useful, improved family dynamics and income, increased understanding, ability to relate to others, to have friends, to enjoy family, and to have support in times of crisis. Professionals had high levels of leadership responsibilities and experience, while family members had moderate levels and users had very low levels of leadership.
Family caregivers were strong in the areas of training for and acting as class instructors, coordination of monthly support groups, and facilitation of advocacy. Comparison of users, caregivers and professionals by duration of leadership roles in principal program components, for example, coordination of public awareness projects, or service on coordination leadership team, or facilitator of the psycho-social group for users.
Users did not perceive themselves as leaders. They stated that they did not participate in leadership for monthly support groups, as board members of the association, or as part of the Coordinating Team. Nor did they act as peer facilitators of the psychosocial group. Most of these components were facilitated and led by family caregivers. Regarding the psychosocial group, one user reflected a long time on whether or not he was a leader in this group and finally stated that while he was not the one with deciding power, he did help others by encouraging them not to abandon their treatment and providing a listening ear.
However, he did not recognize these as peer leadership abilities. While there has been participation in other interventions, there was a generally high level of dissatisfaction with those experiences. Positive experiences included workshops by other non-governmental organizations NGOs , treatment at a private hospital, support at church, and a short-lived day program that was closed because it was too expensive to maintain clientele.
Participants responded to several questions using a Likert scale. Effectiveness, satisfaction and sense of belonging were all rated highly. Effectiveness of the FESEP program at improving the mental health wellbeing for program participants was rated 4. Level of satisfaction with the program had the same rating. Sense of belonging had the highest response rate across subgroups, with an average of 4.
Comparison of users, caregivers and professionals using a Likert scale 1—5 to indicate perceived sense of effectiveness, satisfaction and sense of belonging that the program represents for each individual. Participation was low in other civil society groups: one family caregiver participated in three all related to disability , but two other caregivers and one user each participated in only one other civil society group two of these were church communities.
Comparison of users, caregivers and professionals using a Likert scale 1—5 to indicate levels of interpersonal and institutional trust. Private practice providers were rated at 3. Next, nearly a point down, came the national psychiatric hospital at a moderate 2. Finally at 2. We asked a series of 11 questions to the focus group. Detailed discussion of the responses are covered in the Additional file 4. Below we note the program benefit themes, divided into micro, mezzo, and macro social levels.
We provide examples of quotations for each social level. At the micro level we identified a number of themes related to individual benefits that people experienced through the program. Users and caregivers expressed individual level achievements and benefits of participation, including keeping occupied, channeling energy usefully, personal attention, self-understanding and self-management, improved self-esteem, feeling useful to others and to society, chance to unburden oneself and express feelings, find support, understanding the illness, opportunities to advocate for systemic change, increasing sense of empowerment, ability to help others.
Responses reflected benefits at the family level. Users learned to improve family relationships, to help out, and to reduce fighting. They also feel empowered to deal with critical and demanding family members. Caregivers feel less stress and enjoy their loved one more. They are able to identify myths, to coordinate care better, to deal with their caregiver burnout, and to respect the human rights of their loved one.
Professionals describe benefits gained through volunteering. Participants reflected on benefits experienced at the level of their community or neighborhood. Users feel they are treated as normal people now, not trapped inside their homes. They know how to manage situations and are able to make friends. Neighbors are sounding boards who affirm how users have changed or improved. Caregivers are not afraid when their loved ones go out, they feel understood by others in the community, are empathetic with others who have disabled family members, have improved ability to listen to others, can create a shield of protection against those who would be destructive towards them, and are able to overcome community stigma to be able to talk with others.
They feel empowered to relate to others in order to create greater understanding about human rights. Professionals said they can often enter dangerous neighborhoods because their work is appreciated. One now wants to work now at the level of community services rather than in a clinic or hospital. All subgroups of participants agreed that there were organizational benefits at the mezzo level as well. These included that the program develops horizontal leadership, the ability to organize, and that this results in the establishment of a formal group and advocacy by the group.
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Rather than feeling invisible, they feel they have an identity as a respected organization and this results in collaboration with other organizations and achievements in advocacy. Achievements through the development and functioning of an organization. Members of the FESEP program joined many other civil society groups in holding forums and marching in street protests calling for passage of the law.
For the mentally ill and their family members, this was a huge achievement, moving from stigmatized isolation to public protest. Despite significant odds, the coalition of groups succeeded in passage of the law in early Participants identified national macro level benefits and achievements. These included the opening of spaces for advocacy on a national level, participation as members of national commissions for disability rights and health care reform, holding national forums to highlight mental health needs, and awareness trainings held for health, security, and other professionals.
These are important achievements because no one else is advocating for disability rights from the psychosocial perspective. As a result of these and radio programs, they feel they have reduced stigma in the country. They are also recognized by and invited to events of the ministry of health and the Pan American Health Organization on an international basis. They recognize there are more groups now than ever in El Salvador, and they are starting to assist sister groups in other countries. This appears to contrast with World Values Survey results for El Salvador that were averaged between and [ 42 ].
Levels of interpersonal trust in Latin America average — Measures of social capital reflect levels of satisfaction and efficiency that citizens feel towards their governments and other institutions within their societies. Social capital helps institutions function well and achieve goals that citizens want.
Trust, then, is a major means of measuring how well people can work together to accomplish larger goals. This chart shows that El Salvador is in the middle of measures of interpersonal trust among countries in the Americas, with Canada and the USA having relatively high levels of trust, and Peru and Brazil at the bottom. The question then arises, do community self-help groups and organizations help to create higher levels of social capital among participants that facilitates more effective and satisfying organizations? Does increased social capital at both the individual and organizational levels help these organizations to accomplish their goals?
Users in this small study tended to trust at higher levels than families or professionals when asked about places they received services nonprofits and psychiatric hospital , yet they had lower generalized trust, which refers to how they are treated by people in the wider society. This is a dynamic that researchers of social capital and trust should take into account—that different types of people, specifically those with mental illnesses, will have different levels of trust towards different people and institutions due to their experiences of stigma as well as assistance from those institutions.
Overall, responses regarding generalized trust and trust in private mental health services was moderate, while trust in the government and governmental mental health services was low. Trust in nonprofit programs benefiting people with mental illness and their families was very high. For example, one user noted,. Hospital workers try to avoid working hard in both public health clinics and hospitals. The situation is the same in both the mental health system and the general health care system.
They are more concerned with themselves than with the patients. Comparison of educational levels of focus group participants revealed that both user and family subgroups had several participants with professional degrees. Despite many participants having higher education, only the professional group had stable employment. This reflected challenges faced by focus group members who have mental illness or caregiver commitments to care for loved ones with mental disabilities limiting their ability to obtain and maintain employment. It is consistent with World Health Organization and International Labor Organization reports on extremely high unemployment rates for those with mental disabilities [ 43 ].
This study potentially indicates benefits such as increased and effective advocacy, inclusion of persons with disabilities, perception of reduced stigma in both communities and across society, and civil society development. Focus group members felt an identity through the organization and a sense of common purpose, which we think may be heightened through the methodology of supported peer leadership and service provision.
Family support repeated surfaced as a benefit. It was seen as facilitating both improvements in family relations within the home and moving the user toward participation in the program, from which the user could progress on many fronts. Focus group members, whether users, family caregivers or professionals, all expressed deep feelings regarding the positive impact the FESEP program had on them across social, functional and emotional dimensions.
The perceived benefits were often tied to their position within the program, reflecting different needs for users, family members and professionals. It shows that this type of multi-component program may be able to address a wide variety of needs for people connected in different ways to mental illness. Participants clearly and easily delineated program benefits according to social level analysis. Focus group members agreed on the importance of leadership to organizational success and outlined leadership qualities, roles, and methodology that contributed to this success.
Special emphasis was given to the perceived benefits of horizontal leadership. Family members felt leadership was shared, and a variety of participants were offered opportunities for responsibilities and leadership roles. It is a methodology that allows participants to discover and develop leadership skills.
In the context of disabilities, it has been found to be particularly useful in helping stigmatized populations to improve physical and mental health [ 47 ]. Social capital was recognized as important. All subgroups agreed that the organization had done tremendous work increasing its social capital bonding internally and bridging trust and respect with other groups and networks across society, especially within the disability rights movement , but that more remained to be achieved.
We think social capital is essential if groups are to assume a leadership role in grassroots advocacy for change in mental health systems. Participants reflected progress in understanding illness and acceptance of illness, both of which are key to successfully participating in treatment [ 10 , 48 — 50 ]. The idea is that participants have changed from being afraid and isolated to being public advocates, from feeling lost to gaining insight and understanding and finding community, and from living in conflict to widely improved social relations.
Comments reflected how this transformational change results in practical gains—people take on responsibilities in the group, they develop leadership skills, and they offer their voluntary services [ 51 — 54 ]. Such individual and social transformation was perceived as a significant achievement because of the extent of stigma against those with mental illness in the Salvadoran society.
Only recently through the efforts of the FESEP program have persons with mental illnesses been recognized by the government and by the NGO human rights community as an additional group of persons with disability rights in El Salvador. Generally the data from the individual questionnaire and the focus group data corresponded well, especially related to high levels of support for the FESEP program, defining a broad array of benefits, and seeing those benefits across multiple social levels.
While the focus group espoused horizontal leadership and leadership development, the reality reflected in the individual questionnaires showed that in fact was quite different for users. They did not perceive themselves as leaders and had not been given leadership positions in the organization. As a result, their social capital was not being fully realized. Group interviews are recognized as having multiple benefits, including stimulating discussion, opening up new perspectives for the participants, hearing the ideas of others helps participants to formulate their own opinions, and encouragement to speak for marginalized participants [ 55 ].
We found these benefits in our focus group. Authors also observed how the process methodology contributed to learning about benefits they had not heard of or thought about, and gaining an increased appreciation of the program. We note that the methodology employed by ACISAM in facilitating the FESEP program is similar to the bio-psycho-social model of community based rehabilitation promoted by the Pan American Health Organization, which carries the following benefits: empowerment, participation, strengthening of civil organizations, decentralization of services for accessibility, and multi-sectorial participation [ 56 ].
In our study, professionals and support organizations were strategic partners with families and users. Chien and Norman [ 25 ] reviewed 25 studies in HICs that usually included the participation or leadership of nurses and other professionals. However, the methodology of professionals acting not as trainers or therapists or task-shifters but acting as allies, facilitating the development of user and family leadership and organizations in LMICs, continues to need further research. We identified suggestions for program improvements: further development of user leadership skills and increased participation for users in leadership positions; incorporation of logic model outcomes and impacts into planning, evaluation processes, and organizational reports; strengthening the employment component of the program; and continued nurturing of trust with key mental health institutions in the country.
The high levels of trust in NGO mental health programs serving users and families should be leveraged to work more closely with low-trust institutions such as the government and the institutions of the mental health system, because these institutions are key to systemic change.
All focus group participants were thus able to gain knowledge regarding how and why their program may be effective, as well as what outcomes might be useful and measurable for future program evaluation that could include their participation. Salvadoran co-investigators developed knowledge and skills in helping to carry out this type of research, including standards for research on human subjects, and established a foundation for future work on evaluations and research for their organizations and programs. The study highlighted the need for community based mental health organizations in Latin America to improve evaluation processes by focusing more on outcome and impact measures and to involve professionals and program participants in research in order to build research capacity.
This could result in an appreciation for the important role that they themselves must play in program improvements and the identification of best practices for mental health within the Latin American socioeconomic and political context. Users and family caregivers are a potential large pool of volunteers to assist in carrying out community based programs such as support, education, income generation, and advocacy. They are a powerhouse of volunteerism that the government should nurture and support as it seeks low-cost ways to address the gap in treatment and services.
User and family self help groups, organizations and programs appear to have a dramatic impact on the mental health wellbeing of both users and their family members, and these integrated, multi-component programs should be an important part of national collaborative interventions.
Thus, governments should support such grassroots organizations by including them in policy discussions, strategic planning, and human rights commissions, and support structures that nourish and sustain such groups, including financial support, which is common in HICs. Combining best practices in community-oriented psychiatry with best practices in organizational development for civil society mental health groups could result in significant improvements in mental health systems for LMICs.
Partnerships between multiple stakeholders that include those with the most at stake users and their family caregivers hold promise for achieving significant change—improved services and closing the treatment gap for persons with mental illness and the budget gap for government health ministries. It is clear that governments in LMICs cannot address the challenge of mental illness alone. But nor can the nonprofit and civil society sectors. Together they must address the gap in public awareness around mental health needs, stigma, and lack of services.
National mental health care budgets need to be drastically increased, services decentralized and improved, and marginalized users and families placed in the center of the mental health care model. This is the first study to explore potential benefits of these groups across micro, mezzo and macro social levels and to include discussion of more diverse potential benefits such as individual and organizational social capital, leadership, and advocacy. These are factors that should be explored in future quantitative studies that could confirm the broad types of benefits and effects of those benefits for these populations.
Such studies should contrast these impacts with treatment as usual and cost effectiveness in order to help determine the relative importance and usefulness of such programs in meeting World Health Organization goals for access to mental health treatment and quality community-based services [ 60 , 61 ]. Based on the outcomes of this focus group study, we recommend further study, particularly quantitative and mixed methods studies of the multi-component FESEP and similar programs in order to establish causality and generalizability.
Two other studies of similar programs call for randomized trials, longitudinal and qualitative descriptive studies of people who participate in these types of programs [ 7 , 27 ]. Programs vary widely from country to country. Until recently across Central America these programs had little contact to share program models, knowledge, experiences or resources.
As a result, further comparative qualitative studies could lay the groundwork for identifying commonalities and variables that would be measurable across different programs in different Latin American countries, contributing to an increased ability to use quantitative studies and to identify best practices for such groups. This study does not address the use of medications. We recommend evaluation of the role of pharmacological treatment in community programs, because it appears to us that smaller doses are achievable for maintaining stability for those in community based programs versus hospital based programs.
One thing we can share is a common understanding that our struggle is global—users and family carers the world over share a common experience. We also share a need for the same basic qualities of life—health, work, respect, friends, opportunities, and love. The greatest limitation of this study was the small sample size; the study could have been strengthened through a larger number of focus groups [ 62 ]. The potential for researcher bias was strong because the professionals in the focus group also served on the research team.
This could potentially result in both biased researcher interpretation and biased data from FESEP program participants who might have felt they could only report positive outcomes. Because one criterion was longterm duration of participation, the sample was likely to be composed of those FESEP program participants who were most helped and therefore most appreciative and most likely to talk positively about the program.
This points to the need for further studies with larger samples, randomized designs, and outside interviewers. None of the questions focused on negative outcomes or problems with the program. This appears to be a tendency in other qualitative mental health studies of self-help groups reviewed in this paper as well. Future studies should include questions about negative effects, shortcomings and problems with user and family self-help programs, groups and organizations.
This human rights concept impacts how studies and programs view and measure indicators of wellness. Future studies should acknowledge this debate and account for non-compliance as potentially both a positive and negative indicator. Data saturation was not possible due to the limitations of time and cost Participant quotations were presented to illustrate the findings, but each quotation was not identified by a participant number With a small sample, any attempt to describe diverse cases would have been difficult As lead investigator, SN was involved in or oversaw all aspects of the study.
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NF and MR were both involved in the study design, translation, recruitment of participants, assisted with questionnaires for individuals and focus group sessions, data analysis, and approval of final conclusions and final manuscript. All authors read and approved the final manuscript. He has led over 50 cultural competency workshops for university, hospital, church, and other institutions in the USA. He has participated in several National Institute of Mental Health workshops related to global mental health since He is a family caregiver whose brother has schizo-affective disorder.
The authors are deeply appreciative to Victoria Awadalla and Heather Rucker for assistance on the literature review, Lic.
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Cecilia Almendarez for transcription and logistics support, Elyssa Fogleman for paper organization, figures, tables and editing, Lic. Anuraj Shankar, and Dr. Anita Shankar for invaluable guidance, feedback and enlightening conversations. The Dorothy Ann Foundation provided funding for the FESEP program as well as travel and other costs related to the work of SN, but no funding was directly provided for this study, manuscript preparation, or the decision to seek publication.
A special thank you to the staff, volunteers and participants of user and family programs in Central America who have inspired and assisted us in this work. SN receives salary from the Foundation that funds the ACISAM program; he also provides program monitoring, as well as strategic planning and other guidance to the program. MR is a volunteer with the program. In El Salvador, for example, Ministry of Health officials admit they have no idea how much is spent on mental health, since budget items are not categorized to capture that kind of information personal communications with anonymous officials in El Salvador and Nicaragua in May and July, Potential disadvantages include interaction effects, subjective interpretation and moderator bias [ 35 ].
We add footnotes on cultural context that help explain focus group responses for readers outside of the Salvadoran context. In this study, civil society refers broadly to the nonprofit sector, whether formal or informal, legal or not legal. Laws regulating nonprofits are different in El Salvador, but the civil society sector is largely the same as the US However, many more groups do not have legal status due to the bureaucratic and financial difficulties of achieving that status.
The benefit of legal status is the ability to participate in coalitions, whereas in the US the benefit is the ability to receive tax-deductible donations. Similarly, this may cause them to see themselves as people who do not have the capacity to be leaders. Samuel V. Nickels, Email: gro. Nelson A. Flamenco Arvaiza, Email: moc. Myrna S. Rojas Valle, Email: moc. National Center for Biotechnology Information , U. Int J Ment Health Syst. Published online Apr 1. Nickels , Nelson A. Flamenco Arvaiza , and Myrna S. Rojas Valle.
Flamenco Arvaiza. Author information Article notes Copyright and License information Disclaimer. Corresponding author. Received Nov 24; Accepted Mar This article has been cited by other articles in PMC. Abstract Background There is a significant gap in our knowledge regarding community-based self-help groups and their benefits for persons living with mental conditions and their family caregivers in low and middle income countries. Case description The Family Education, Support and Empowerment Program is a multi-component program in the capital that is facilitated by nonprofit professionals but carried out primarily by volunteers.
Results The study found perceptions of multiple benefits across social, functional, and economic dimensions and a variety of achievements at organizational and national levels. Discussion This study identified a family self-help program in El Salvador as a potentially highly beneficial program for its participants. Electronic supplementary material The online version of this article doi The role of user and family groups One low-cost intervention for persons with mental illness and their family members is self-help groups SHGs [ 7 ].
Purpose of the study This study seeks to increase understanding of user and family self-help programs within the context of Latin America; to explore whether and to what extent the Family Education, Support and Empowerment Program FESEP is perceived as potentially effective and satisfying by its participants; to help the program build evaluation capacity and opportunities for program improvements; and to lay the groundwork for further quantitative study by identifying potential indicators to help evaluate program impact.
Research design and measures Researchers carried out a qualitative evaluation using a focus group [ 30 — 32 ] and used a technique that adds value to the program by helping it to determine potential outcomes and impacts, help program participants see what they have achieved [ 33 ], and help organizational leaders develop greater evaluation and research capacity [ 34 ].
Table 1 Participant demographics and selection criteria. Users Family caregivers Professionals Age range : 21—45 years average: 37 years Gender : two males, one female three persons total Illness : all users suffered from schizophrenia Selection criteria : length of time participating in program, illness stability, and ability to communicate thoughts and feelings Age range : 26—62 years average: 37 years Gender : no males, four females four persons total Relationship to persons with mental Illness : mother, daughter, and two siblings Selection criteria : length of time participating in program, emotional stability, and breadth of program participation Age range : 37—53 years average: 46 years Gender : two males, one female three persons total Principal investigator : American white male, program founder, family caregiver, 17 years of program experience in El Salvador Salvadorian professionals : male psychologist and female psychiatrist Selection criteria : length of time participating in program and maximum variation of program role.
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