Background
The role of user and family groups
Need for this study
Purpose of the study
Intervention description
Research design and measures
Study population and sampling
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 |
Data collection and analysis
Language
Ethical considerations
Results3
Results related to the individual questionnaires
Program participation
Sub-group | Family caregivers | Users | Professionals |
---|---|---|---|
Family education class (total years)a
| 4 | 0 | 3 |
Average years | 1 | 0 | 1 |
Monthly support Group (total years) | 23.5 | 15b
| 22 |
Average years | 5.9 | 5 | 7.3 |
Public awareness projects (total years) | 12 | 2 | 22 |
Average years | 3 | 0.7 | 7.3 |
Advocacy national service (Total years) | 17 | 13 | 14 |
Average years | 3.4 | 4.3 | 4.7 |
Visits to homes in crisis (total years) | 2 | 1 | 18 |
Average | 0.5 | 0.3 | 6 |
Psycho-social group (total years) | 0 | 21 | 0 |
Average years | 0 | 7 | 0 |
Other (total years)c
| 14 | 18 | 30 |
Average years | 3.5 | 6 | 10 |
Improvements related to FESEP program participation
Subgroup | Comments |
---|---|
Users | Since I began to participate in FESEP I feel acceptance, I feel useful, I occupy my time, and I get moral support |
Now I don’t sleep so much of the day. My family situation has improved because everyone is participating in the program, including the other person with a mental illness, so there are not big fights now. There’s more income, more understanding between us. I get out of the house to go to the program. Family members are not so demanding and directing because they understand of my condition | |
I’m able to relate to others now. I respect my grandfather. I coexist with others and think positively. I am happy. I have friends | |
Family caregivers | Our family members now have an understanding of my brother. We look for creative ways to treat him. For example, we hide his morning meds in his oatmeal |
Now we can talk and eat together, we laugh together. My older son stopped smoking. Home crisis intervention by ACISAM professionals was very helpful once when the police had to be called to take my psychotic son to the hospital |
Leadership development
Sub-group | Family caregivers | Users | Professionals |
---|---|---|---|
Family class instructor (total years)a
| 7 | 0 | 17 |
Average years | 1.8 | 0 | 5.3 |
Support group coordination (total years) | 10 | 0 | 10 |
Average years | 2.5 | 0 | 3.3 |
Public awareness projects (total years) | 3.5 | 2 | 15 |
Average years | 0.9 | 0.5 | 5 |
Board/coordination team (total years) | 5 | 0 | 7 |
Average years | 1.3 | 0 | 2.3 |
Advocacy national service (total years) | 6.5 | 0 | 26 |
Average years | 1.6 | 0 | 8.7 |
Psycho-social group (total years) | 2 | 0b
| 16 |
Average years | 0.5 | 0b
| 5.3 |
Other (total years)c
| 0 | 0 | 40 |
Average years | 0 | 0 | 13.3 |
Participation in services and programs beyond FESEP
Program impact and satisfaction
Sub-group | Family caregivers | Users | Professionals |
---|---|---|---|
Program effectiveness | 4 | 4 | 4.7 |
Program satisfaction | 5 | 5 | 4.7 |
Sense of belonging | 4.7 | 4.7 | 5 |
Civil society participation and levels of trust6
Sub-group | Family caregivers | Users | Professionals |
---|---|---|---|
Generalized trust | 3.5 | 3 | 3.3 |
Private providers | 3.5 | 3.5 | 3.7 |
National psychiatric hospital | 2.8 | 3.3 | 2.7 |
ACISAM facilitating NPOa
| 4.5 | 4.7 | 4.7 |
AFAPDIM family/user NPO | 3.3 | 4.7 | 4 |
CHHD foreign support NPO | 4.5 | 5 | 5 |
Results related to the focus group sessions
Subgroup | Comments |
---|---|
Users | The program keeps me occupied |
The program channels my energies | |
I receive personalized attention for dealing with my problems | |
I learn about myself, my problem, and I find answers that help me to overcome the agony | |
I felt my self-esteem grow when I began to earn money | |
One feels useful, from the family to the organization and even for our society | |
Family caregivers | The program helps unburden family caregivers |
One can speak freely and express hidden feelings | |
We find support in the program | |
I receive help in emergency moments of crisis | |
I feel this is my family; I can cry here | |
I feel accepted and free to be myself | |
Understanding and insight, for the illness and user, and for going to the streets to defend our rights in public protests | |
Our empowerment evolves; we grow with time and practice | |
I discovered I can help others | |
I discovered a different way to working—in a group. There is no boss looking over my shoulder |
Subgroup | Comments |
---|---|
User | I learned to improve my relationships. I’m not jealous of my wife anymore |
I cooperate and help out more, like going out to buy tortillas and sweeping | |
I don’t fight with family members now. We have lower levels of confrontation | |
I feel less pressure and demands by my family members on me | |
The program helps me to try to improve relationships with some family members who are indifferent and condescending towards me | |
Family caregiver | Stress relief: we can rest because the user is not in the house all the time. Families also don’t get bored of the user, we can enjoy our ill loved one more |
The level of understanding goes up in the family and this is transmitted and felt by the user too | |
Life is easier in the family. Learning how to care for my two schizophrenic sons has helped us all improve our communication in the family with my deaf daughter | |
I try to share what I’ve learned with other family members | |
The program helps with unification of the family as myths and blaming disappear | |
There is improved coordination of care by family caregivers | |
Family members learn to respect the user and become more tolerant of the user’s behavior | |
Families understand and fight against user dependency (co-dependency and dependency issues), and against their own caregiver burnout | |
Professional | As a volunteer, the program has helped me to create a conscience in my children, to the point where they encourage me to let go of family time and do my volunteer work with the program |
Subgroup | Comments |
---|---|
User | I have a relaxed life in my neighborhood. People greet me. I feel good in the street |
Before, I was in the house because neighbors could not stand me. But now we talk. They even encourage me to keep making hammocks | |
I know now how to avoid neighbors to avoid problems when I go out | |
I get along with everybody, I’m proud and share it with church friends, that I can leave the house on my own to go to art therapy and go out looking for work | |
I have a friend now in my neighborhood. It’s easier to talk to people | |
Some people say I’ve changed dramatically | |
Family caregiver | Now I’m not afraid that my son is not going to return when he goes out |
We’re better understood by others in the community | |
I have more insight now. I can talk with whoever about mental health | |
I am more empathetic with other in the community, especially families with disabled persons | |
The program has helped improve dialogue, knowing how to listen, to respect the opinions of others | |
It’s helped to create a shield I can use to discern when someone wants to help or not | |
The program has helped us to confront the community on mental health. We’re able to overcome stigma to be able to talk with others. We don’t feel attacked but empowered to relate to others, to create greater understanding about human rights | |
Professional | When we enter dangerous neighborhoods like “Italia,” [the gangs] don’t bother us because they respect our work |
Psychiatrist: After working with this program, I would like to work at the community level and not in the psychiatric hospital |
Achievements | Comments |
---|---|
Across subgroups | The program promotes horizontal leadership |
It develops skills to self-organize | |
The formation of our group [as a government-recognized nonprofit organization] facilitates advocacy and participation at the governmental level. We are empowered to fight for the defense of human rights | |
We are no longer invisible; we have an identity | |
It develops our understanding of the importance of self-organization to resolve problems, like the Medications Lawa
| |
It promotes collaborations with other nonprofits |
Achievement | Comments |
---|---|
National level advocacy | The program has opened spaces for participation in advocacy, which is really important because there are no other organizations in the country working in the psychosocial area |
We are now established as the non-governmental mental health entity in national forums | |
Advocacy as members of the CONAIPD coalition. Participation [in this governmental and NGO advocacy council] has been a great way to relate to other nonprofits in the country. To be part of a large network increases our impact. It allows us to educate other nonprofits about mental health and shows users and their family members are part of the movement for disability rights tooa
| |
We are positioned in the civil society. The Ministry of Health has taken notice of us and invited us to participate in the first revision of the 2008 national law on mental health. The Pan American Health Organization (PAHO) invited our representative members to participate in international conferences in Panama (2010) and Brazil (2013) | |
Anti-stigma activities and advocacy | Educational and sensitization trainings directed at the sectors of society that work with users and families in the community, such as programs with the national civilian police force and national psychiatric hospital workers about the human rights of persons with mental health problems, the role of the family as partners in treatment, the needs of families in the community, and information about our FESEP program that serves as a referral resource for police, hospital personnel, and public health clinic workers |
National forums that have brought together diverse sectors of society | |
We’ve worked to sensitize society through the media, especially radio. I think our society is more educated about mental health and there is less stigma | |
Needs of users | We’ve identified and promoted needs of users that have not been identified by the government, for example, education and work opportunities |
Thinking big | We are growing. There are more groups in El Salvador now than before |
We need groups all over Central America to help users and families in other countries, to promote advocacy, and to form international networks to strengthen our advocacy |
Discussion
Analysis related to the pre-focus-group individualized questionnaire
“If you go to the hospital to see a doctor and your case is not grave, they don’t attend to you. 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. Workers complain we patients are not cooperating, not making an effort, but it’s not true. If we’re not taking our meds or going to follow-up appointments it’s often because we don’t have the money to do so. The psychiatric hospital staff doesn’t trust anyone. They are more concerned with themselves than with the patients.”